WorldWideScience

Sample records for sustainable orphan care

  1. Experiences of orphan care in Amach, Uganda: assessing policy ...

    African Journals Online (AJOL)

    2007-05-01

    May 1, 2007 ... for the care and support of orphans. UWESO has over. 7 500 women members across Uganda who voluntarily foster orphans and/or monitor orphans in their villages. NACWOLA addresses bereavement as a neglected issue in orphan support programmes, and works to break the silence on HIV/AIDS in.

  2. Care of HIV-positive orphans by elderly people in Swaziland

    African Journals Online (AJOL)

    support systems of the elderly caregivers. It serves to summarise the findings of the study and reveal areas for intervention strategies. Care of HIV-positive orphans by elderly people in Swaziland. The elderly are often the only remaining carers for children orphaned in the HIV pandemic. KEViN MaKaDZaNGE, MB ChB, ...

  3. Care of HIV-positive orphans by elderly people in Swaziland

    African Journals Online (AJOL)

    Care of HIV-positive orphans by elderly people in Swaziland. The elderly are often the only remaining carers for children orphaned in the HIV pandemic. .... Shortage of drugs for opportunistic diseases. • Lack of protective clothing. Physical constraints. • Chronic ill health. • Lack of strength. Psychological constraints.

  4. Experiences of orphan care in Amach, Uganda: assessing policy ...

    African Journals Online (AJOL)

    2007-05-01

    May 1, 2007 ... or “orphans are enrolled in schools on an equal scale to non-orphans”.The emphasis ..... not least during school hours due to inadequate breakfast and lunch. .... number of practical outcomes of utmost importance for orphans' ...

  5. Post-authorisation assessment of orphan drugs

    NARCIS (Netherlands)

    Hollak, C.E.M.; Biegstraaten, M.; Levi, M.; Hagendijk, R.

    2015-01-01

    The EU regulation of orphan drugs has promoted the development of new treatments for rare disorders.1 However, the high cost of most orphan drugs threatens the sustainability of public health care. Unfortunately, the effectiveness of treatment is often unclear for part, if not all, of the patient

  6. Care and support of orphaned and vulnerable children at school ...

    African Journals Online (AJOL)

    A qualitative research design was followed to purposively select teachers who had attended the departmental training to participate in focus groups to explore the phenomenon of teaching orphaned and vulnerable children. The findings that emerged from the thematic data analysis provided supporting evidence that current ...

  7. Barriers and Incentives to Orphan Care in a Time of AIDS and Economic Crisis: A Cross-Sectional Survey of Caregivers in Rural Zimbabwe

    Science.gov (United States)

    Howard, Brian H.; Phillips, Carl V.; Matinhure, Nelia; Goodman, Karen J.; McCurdy, Sheryl A; Johnson, Cary A.

    2007-01-01

    Background: Africa is in an orphan-care crisis. In Zimbabwe, where one-fourth of adults are HIV-positive and one-fifth of children are orphans, AIDS and economic decline are straining society's ability to care for orphans within their extended families. Lack of stable care is putting thousands of children at heightened risk of malnourishment,…

  8. Willingness to care for children orphaned by HIV/AIDS: a study of ...

    African Journals Online (AJOL)

    The present study explores adoptive and foster parents' (n = 175) willingness to care for a child orphaned by HIV/AIDS. Although some differences were noted depending on the HIV status of the child and whether the respondent was an adoptive or foster parent, results indicate an overall willingness in these populations to ...

  9. Rwanda’s OrphansCare and Integration During Uncertain Times

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    Manuela Elisabeth Kuehr

    2015-04-01

    Full Text Available Children and youth are considered cornerstones of development in post-conflict state-building practices. In the case of Rwanda, the government has engaged in an ambitious state-initiated deinstitutionalization project that anticipates the closure of all officially registered orphanages between 2012 and 2014. As a consequence, all orphans within institutional care will return to their extended families or be placed with foster parents to be given the opportunity to grow up within a Rwandan family environment. By investigating the lived realities of orphans before their departure from the orphanage, it becomes apparent that there is no “one size fits all” approach to systems of child care as historical and psychosocial dynamics play a crucial role.

  10. Experiences of support and assistance given to high school orphans ...

    African Journals Online (AJOL)

    ... common experiences of the orphans. Most regard support they receive to deal with their daily challenges as inadequate. It is recommended that orphan support system be re-visited, to enhance the lives of orphaned children. Keywords: AIDS, orphan, paternal orphan, maternal orphan, double orphan, Kinship foster care ...

  11. Care and support of orphaned and vulnerable children at school ...

    African Journals Online (AJOL)

    learners, school management and. NGOs. Selected educators are trained in lay counselling ..... much to offer to the HIV debate” (Visser-Valfrey, 2004:224). They offered ideas around how ... together to address the care and support of OVC; there is a need for leadership to take the initiative to strategically and democratically ...

  12. AIDS orphans in Louisiana in the year 2000: the potential economic impact on the foster care system.

    Science.gov (United States)

    Parsons, S; Merrick-Roddy, P

    1996-09-01

    This study estimates the number of AIDS orphans in Louisiana and projects the fiscal demand on the state's foster care system in the year 2000. The Michaels and Levine model is used to estimate the number of orphans, and state foster care data are used to project the placement cost of those AIDS orphans. Between 1992 and the year 2000, the AIDS orphan count in Louisiana is estimated to range between 1,242 and 2,627 infants and children. Black children are estimated to comprise the overwhelming majority of this population. If only 50% of the AIDS orphans this study projects for the year 2000 require foster care services, the state of Louisiana would need additional revenues for that year alone, ranging from $308,112 to $624,546, to serve those new entrants. This study provides a critical starting point for state policy planning. The AIDS orphan population in Louisiana is growing each year and the needs of these infants and children must be anticipated and accommodated.

  13. Models of care for orphaned and separated children and upholding children's rights: cross-sectional evidence from western Kenya.

    Science.gov (United States)

    Embleton, Lonnie; Ayuku, David; Kamanda, Allan; Atwoli, Lukoye; Ayaya, Samuel; Vreeman, Rachel; Nyandiko, Winstone; Gisore, Peter; Koech, Julius; Braitstein, Paula

    2014-04-01

    Sub-Saharan Africa is home to approximately 55 million orphaned children. The growing orphan crisis has overwhelmed many communities and has weakened the ability of extended families to meet traditional care-taking expectations. Other models of care and support have emerged in sub-Saharan Africa to address the growing orphan crisis, yet there is a lack of information on these models available in the literature. We applied a human rights framework using the United Nations Convention on the Rights of the Child to understand what extent children's basic human rights were being upheld in institutional vs. community- or family-based care settings in Uasin Gishu County, Kenya. The Orphaned and Separated Children's Assessments Related to their Health and Well-Being Project is a 5-year cohort of orphaned children and adolescents aged ≤18 year. This descriptive analysis was restricted to baseline data. Chi-Square test was used to test for associations between categorical /dichotomous variables. Fisher's exact test was also used if some cells had expected value of less than 5. Included in this analysis are data from 300 households, 19 Charitable Children's Institutions (CCIs) and 7 community-based organizations. In total, 2871 children were enrolled and had baseline assessments done: 1390 in CCI's and 1481 living in households in the community. We identified and described four broad models of care for orphaned and separated children, including: institutional care (sub-classified as 'Pure CCI' for those only providing residential care, 'CCI-Plus' for those providing both residential care and community-based supports to orphaned children , and 'CCI-Shelter' which are rescue, detention, or other short-term residential support), family-based care, community-based care and self-care. Children in institutional care (95%) were significantly (p institutions were better able to provide an adequate standard of living. Each model of care we identified has strengths and weaknesses

  14. Impact of Domestic Care Environment on Trauma and Posttraumatic Stress Disorder among Orphans in Western Kenya

    Science.gov (United States)

    Atwoli, Lukoye; Ayuku, David; Hogan, Joseph; Koech, Julius; Vreeman, Rachel Christine; Ayaya, Samuel; Braitstein, Paula

    2014-01-01

    Objective The aim of this study was to determine the impact of the domestic care environment on the prevalence of potentially traumatic events (PTEs) and posttraumatic stress disorder (PTSD) among orphaned and separated children in Uasin Gishu County, western Kenya. Methods A total of 1565 (55.5% male) orphaned and separated adolescents aged 10–18 years (mean 13.8 years, sd 2.2), were assessed for PTSD and PTEs including bullying, physical abuse and sexual abuse. In this sample, 746 lived in extended family households, 746 in Charitable Children's Institutions (CCIs), and 73 on the street. Posttraumatic stress symptom (PTSS) scores and PTSD were assessed using the Child PTSD Checklist. Results Bullying was the commonest PTE in all domestic care environments, followed by physical and sexual abuse. All PTEs were commonest among the street youth followed by CCIs. However, sexual abuse was more prevalent in households than in CCIs. Prevalence of PTSD was highest among street youth (28.8%), then households (15.0%) and CCIs (11.5%). PTSS scores were also highest among street youth, followed by CCIs and households. Bullying was associated with higher PTSS scores and PTSD odds than either sexual or physical abuse. Conclusion This study demonstrated differences in distribution of trauma and PTSD among orphaned and separated children in different domestic care environments, with street youth suffering more than those in CCIs or households. Interventions are needed to address bullying and sexual abuse, especially in extended family households. Street youth, a heretofore neglected population, are urgently in need of dedicated mental health services and support. PMID:24625395

  15. Impact of domestic care environment on trauma and posttraumatic stress disorder among orphans in western Kenya.

    Directory of Open Access Journals (Sweden)

    Lukoye Atwoli

    Full Text Available The aim of this study was to determine the impact of the domestic care environment on the prevalence of potentially traumatic events (PTEs and posttraumatic stress disorder (PTSD among orphaned and separated children in Uasin Gishu County, western Kenya.A total of 1565 (55.5% male orphaned and separated adolescents aged 10-18 years (mean 13.8 years, sd 2.2, were assessed for PTSD and PTEs including bullying, physical abuse and sexual abuse. In this sample, 746 lived in extended family households, 746 in Charitable Children's Institutions (CCIs, and 73 on the street. Posttraumatic stress symptom (PTSS scores and PTSD were assessed using the Child PTSD Checklist.Bullying was the commonest PTE in all domestic care environments, followed by physical and sexual abuse. All PTEs were commonest among the street youth followed by CCIs. However, sexual abuse was more prevalent in households than in CCIs. Prevalence of PTSD was highest among street youth (28.8%, then households (15.0% and CCIs (11.5%. PTSS scores were also highest among street youth, followed by CCIs and households. Bullying was associated with higher PTSS scores and PTSD odds than either sexual or physical abuse.This study demonstrated differences in distribution of trauma and PTSD among orphaned and separated children in different domestic care environments, with street youth suffering more than those in CCIs or households. Interventions are needed to address bullying and sexual abuse, especially in extended family households. Street youth, a heretofore neglected population, are urgently in need of dedicated mental health services and support.

  16. РSYCHOLOGICAL AND PSYCHOPHYSIOLOGICAL CHARACTERISTICS OF ORPHANS AND CHILDREN WITHOUT PARENTAL CARE

    Directory of Open Access Journals (Sweden)

    Н. А. Киселева

    2014-01-01

    Full Text Available The article analyzes the psychological and psychophy-siological characteristics of children living in the Children’s Village-SOS and in the Children’s Home. Particular emotional and cognitive areas, self image, creativity, mental stress and neurotic tendencies in orphans and children without parental care are characterized in the article. Age and gender differences in the parameters studied are detected.Purpose. The purpose is to discoverage and gender aspects of the psychological and psychophysiological characteristics of children of orphans and children without parental care living in the Children’s Village-SOS and in the Children’s Home.Methodology. Empirical research of gender particular features of psychic state of alarmness of adopted children with the help of testing.Results. The significant gender differences in terms of phobias and fears were revealed; the significant gender differences on the scale of the emotional content of images were revealed; the study revealed the trends toward significant difference by gender in the manifestation of sleep disorders and autonomic dysfunction;the significant age-related differences in terms of increased anxiety, autonomic dysfunction, eating disorders were revealed.Practical implications. The results are of interest to the science workers of age psychology, gender psychology, social psychology, to the workers of the children’s institutions and to the organizations occupied with medical-social-psychological-pedagogycal maintenance of orphans and children without parental care.Purchase on Elibrary.ru > Buy now

  17. Care and support of orphaned and vulnerable children at school: helping teachers to respond

    Directory of Open Access Journals (Sweden)

    Lesley Wood

    2011-01-01

    Full Text Available It is acknowledged that teacher training programmes around HIV in most of sub-Saharan Africa appear not to have been very effective in assisting teachers to respond to the demands placed on them by the pandemic. In response to the need identified by international development agencies, for research into teacher education and HIV in sub-Saharan Africa, this study investigated teacher perceptions of the effectiveness of training programmes offered in a specific school district in South Africa to equip them to deal with issues arising from having orphans and vulnerable children in their classrooms. A qualitative research design was followed to purposively select teachers who had attended the departmental training to participate in focus groups to explore the phenomenon of teaching orphaned and vulnerable children. The findings that emerged from the thematic data analysis provided supporting evidence that current teacher education approaches in this regard are not perceived to be effective. The results are used to suggest guidelines for an alternative approach to the current forms of HIV and AIDS training for teachers that is more likely to be sustainable, culturally appropriate and suited to the context.

  18. Sexual Behavior Among Orphaned Adolescents in Western Kenya: A Comparison of Institutional- and Family-Based Care Settings.

    Science.gov (United States)

    Embleton, Lonnie; Nyandat, Joram; Ayuku, David; Sang, Edwin; Kamanda, Allan; Ayaya, Samuel; Nyandiko, Winstone; Gisore, Peter; Vreeman, Rachel; Atwoli, Lukoye; Galarraga, Omar; Ott, Mary A; Braitstein, Paula

    2017-04-01

    This study sought to assess whether risky sexual behaviors and sexual exploitation of orphaned adolescents differed between family-based and institutional care environments in Uasin Gishu County, Kenya. We analyzed baseline data from a cohort of orphaned adolescents aged 10-18 years living in 300 randomly selected households and 19 charitable children's institutions. The primary outcomes were having ever had consensual sex, number of sex partners, transactional sex, and forced sex. Multivariate logistic regression compared these between participants in institutional care and family-based care while adjusting for age, sex, orphan status, importance of religion, caregiver support and supervision, school attendance, and alcohol and drug use. This analysis included 1,365 participants aged ≥10 years: 712 (52%) living in institutional environments and 653 (48%) in family-based care. Participants in institutional care were significantly less likely to report engaging in transactional sex (adjusted odds ratio, .46; 95% confidence interval, .3-.72) or to have experienced forced sex (adjusted odds ratio, .57; 95% confidence interval, .38-.88) when controlling for age, sex, and orphan status. These associations remained when adjusting for additional variables. Orphaned adolescents living in family-based care in Uasin Gishu, Kenya, may be at increased risk of transactional sex and sexual violence compared to those in institutional care. Institutional care may reduce vulnerabilities through the provision of basic material needs and adequate standards of living that influence adolescents' sexual risk-taking behaviors. The use of single items to assess outcomes and nonexplicit definition of sex suggest the findings should be interpreted with caution. Copyright © 2016 Society for Adolescent Health and Medicine. Published by Elsevier Inc. All rights reserved.

  19. Role of traditional healers in psychosocial support in caring for the orphans: A case of Dar-es Salaam City, Tanzania

    Directory of Open Access Journals (Sweden)

    Massila Mariam

    2005-07-01

    Full Text Available Abstract Orphans are an increasing problem in developing countries particularly in Africa; due to the HIV/AIDS pandemic; and needs collective effort in intervention processes by including all stakeholders right from the grass roots level. This paper attempts to present the role of traditional healers in psychosocial support for orphan children in Dar-es-Salaam City with special focus on those whose parents have died because of HIV/AIDS. Six traditional healers who were involved in taking care of orphans were visited at their "vilinge" (traditional clinics. In total they had 72 orphans, 31 being boys and 41 being girls with age range from 3 years to 19. It was learned that traditional healers, besides providing remedies for illnesses/diseases of orphans, they also provided other basic needs. Further, they even provided psychosocial support allowing children to cope with orphan hood life with ease. Traditional healers are living within communities at the grass roots level; and appear unnoticed hidden forces, which are involved in taking care of orphans. This role of traditional healers in taking care of orphans needs to be recognised and even scaling it up by empowering them both in financial terms and training in basic skills of psychosocial techniques in how to handle orphans, in order to reduce discrimination and stigmatisation in the communities where they live.

  20. Role of traditional healers in psychosocial support in caring for the orphans: a case of Dar-es Salaam City, Tanzania.

    Science.gov (United States)

    Kayombo, Edmund J; Mbwambo, Zakaria H; Massila, Mariam

    2005-07-29

    Orphans are an increasing problem in developing countries particularly in Africa; due to the HIV/AIDS pandemic; and needs collective effort in intervention processes by including all stakeholders right from the grass roots level. This paper attempts to present the role of traditional healers in psychosocial support for orphan children in Dar-es-Salaam City with special focus on those whose parents have died because of HIV/AIDS. Six traditional healers who were involved in taking care of orphans were visited at their "vilinge" (traditional clinics). In total they had 72 orphans, 31 being boys and 41 being girls with age range from 3 years to 19. It was learned that traditional healers, besides providing remedies for illnesses/diseases of orphans, they also provided other basic needs. Further, they even provided psychosocial support allowing children to cope with orphan hood life with ease. Traditional healers are living within communities at the grass roots level; and appear unnoticed hidden forces, which are involved in taking care of orphans. This role of traditional healers in taking care of orphans needs to be recognised and even scaling it up by empowering them both in financial terms and training in basic skills of psychosocial techniques in how to handle orphans, in order to reduce discrimination and stigmatisation in the communities where they live.

  1. Towards Sustainable Health Care Organizations

    Directory of Open Access Journals (Sweden)

    Mauro ROMANELLI

    2017-09-01

    Full Text Available Health care organizations have to develop a sustainable path for creating public value by seeking legitimacy for building and maintaining public trust with patients as social and economic institutions creating value and sustaining both health and wealth for people and communities within society. Health care organizations having at disposal decreasing resources and meeting increasing demands of citizens are following an unsustainable path. Designing sustainable health care systems and organizations is emerging as a strategic goal for developing the wealth of people and communities over time. Building sustainable organizations relies on valuing human resources, designing efficient and effective processes, using technology for better managing the relationships within and outside organizations. Sustainable health care organizations tend to rediscover the importance of human resource management and policies for effectively improving communication with patients and building trust-based relationships. While processes of accreditation contribute to legitimizing effectiveness and quality of health care services and efficient processes, introducing and using new information and communication technologies (ICTs and informatics helps communication leading to restore trust-based relationships between health care institutions and patients for value creation within society.

  2. A qualitative exploration of resilience in pre-adolescent AIDS orphans living in a residential care facility.

    Science.gov (United States)

    Pienaar, Anja; Swanepoel, Zendré; van Rensburg, Hendrik; Heunis, Christo

    2011-01-01

    This article presents the findings of a study among a small group of South African AIDS orphans living in a residential care facility, Lebone Land. The research was conducted between June and September 2006. A qualitative, exploratory study consisting of in-depth, semistructured interviews with eight children and seven key informants aimed to identify and investigate developmental assets operating in the children's lives to help them cope amid exposure to adversities. The findings indicate that the developmental assets that facilitate coping and foster resilience in these children relate to four main components: external stressors and challenges, external supports, inner strengths and interpersonal and problem-solving skills. Emerging key themes relate to the experience of illness, death, poverty and violence, as well as the important roles of morality, social values, resistance skills, religion and faith in assisting these children in defining their purpose in life. To this end, constructive use of time, commitment to learning, goal-setting, problem-solving ability and self-efficacy are fundamental in the children's attainment of their future projections. Therefore, qualities such as optimism, perseverance and hope seem to permeate the children's process of recovery. Strong networks of support, particularly friendships with other children, also seem to contribute to developing and sustaining resilience.

  3. ANALYSIS OF THE FORMS OF PLACEMENT OF THE ORPHANS AND DEPRIVED OF PARENTAL CARE CHILDREN AND ITS EFFECTIVENESS IN UKRAINE

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    Svitlana Mykoluk

    2015-11-01

    Full Text Available The purpose. This article is devoted to the systems analysis of theoretical and practical aspects of forming of social security system of orphans and children deprived of parental care. Methodology. Covered a topical issue – placement of the orphans and deprived of parental care children. Characterized each form of the children placement emphasizing their fundamental difference and problem questions, consequences and lacks of such determination, are lighted up. Results. Offered a new approach to the forms of the children placement. Modern realities of the state development need considerable rethinking of essence of social security of children, and accordingly raising of new tasks which this system is called to decide, and mechanisms of realization of social security of children, which must be adequate to the markets conditions. Essence and functions of population social security of orphans and children deprived of parental care, are analyzed in the article. Practical meaning. Analysis of management activity in the field of social arrangement of children tells that the main its result is the arrangement of orphans and children deprived of parental care into the different forms of arrangements (adoption, guardianship (trusteeship, foster home, orphanage of family type, care home. We offer to consider the process of quality estimating with help of indicators of efficiency in depends on the priority in arrangement form of child (efficiency of management activity in the questions of adoption (Ead, efficiency of management activity in the questions of guardianship (trusteeship (Eg, efficiency of management activity in the questions of foster homes creation (Efh, efficiency of management activity in the questions of creation family type orphanage, (Ecfto efficiency of management activity in the questions of care homes creation (Echcand general efficiency of management activity in the field of social arrangement of children (Earr. Value

  4. East Africa: AIDS orphans.

    Science.gov (United States)

    Rutayuga, J B

    1995-01-01

    The number of orphans in East Africa is growing rapidly due to the combined effects of the atrocities in Rwanda and Burundi and the acquired immunodeficiency syndrome (AIDS) pandemic. To meet their needs, Ukimwi Orphans Assistance (UOA), a nonprofit nongovernmental organization (NGO), was founded by East Africans in 1990; it has built "secondary family structures" of NGOs in Tanzania, Uganda, and Kenya. Needs assessment studies showed that food producing and income generating projects had highest priority, but communities have made strides in housing, education, and health. Communal food plots, repair and building of shelters, using traditional crafts to earn money for school fees, developing remedial schools, and organizing traditional medical practitioners into clinics have all been undertaken in the effort to stop disease, restore normal living, and forestall socioeconomic collapse. UOA has found that culture-based programs succeed because they offer guarantees of sustainability and cost effectiveness. African principles of kinship and extended family are used to develop resources for providing minimum assistance and to rebuild caring and supporting communities for the children. Determined community efforts should be an incentive for increased external aid.

  5. Cumulative effects of HIV illness and caring for children orphaned by AIDS on anxiety symptoms among adults caring for children in HIV-endemic South Africa.

    Science.gov (United States)

    Kuo, Caroline; Cluver, Lucie; Casale, Marisa; Lane, Tyler

    2014-06-01

    Adults caring for children in HIV-endemic communities are at risk for poor psychological outcomes. However, we still have a limited understanding of how various HIV impacts--including caregiver's own HIV illness, responsibilities of caring for a child orphaned by AIDS, or both--affect psychological outcomes among caregivers. Furthermore, few studies have explored the relationship between stigma, HIV, and psychological outcomes among caregivers of children in HIV-endemic communities. A cross-sectional survey conducted from 2009 to 2010 assessed anxiety among 2477 caregivers of children in HIV-endemic South Africa. Chi-square tested differences in anxiety among caregivers living with HIV, caregivers of a child orphaned by AIDS, and caregivers affected with both conditions. Multivariate logistic regressions identified whether the relationship between HIV impacts and anxiety remained after controlling for socio-demographic co-factors. Mediation analysis tested the relationship between stigma, HIV, and anxiety. The odds of meeting threshold criteria for clinically relevant anxiety symptoms were two and a half times greater among caregivers living with HIV compared to nonaffected caregivers. The odds of meeting threshold criteria for clinically relevant anxiety symptoms were greatest among caregivers living with HIV and caring for a child orphaned by AIDS. Exposure to AIDS-related stigma partially mediated the relationship between HIV and anxiety. Interventions are needed to address caregiver psychological health, particularly among caregivers affected with both conditions of living with HIV and caring for a child orphaned by AIDS.

  6. Cumulative Effects of HIV Illness and Caring for Children Orphaned by AIDS on Anxiety Symptoms Among Adults Caring for Children in HIV-Endemic South Africa

    Science.gov (United States)

    Cluver, Lucie; Casale, Marisa; Lane, Tyler

    2014-01-01

    Abstract Adults caring for children in HIV-endemic communities are at risk for poor psychological outcomes. However, we still have a limited understanding of how various HIV impacts—including caregiver's own HIV illness, responsibilities of caring for a child orphaned by AIDS, or both—affect psychological outcomes among caregivers. Furthermore, few studies have explored the relationship between stigma, HIV, and psychological outcomes among caregivers of children in HIV-endemic communities. A cross-sectional survey conducted from 2009 to 2010 assessed anxiety among 2477 caregivers of children in HIV-endemic South Africa. Chi-square tested differences in anxiety among caregivers living with HIV, caregivers of a child orphaned by AIDS, and caregivers affected with both conditions. Multivariate logistic regressions identified whether the relationship between HIV impacts and anxiety remained after controlling for socio-demographic co-factors. Mediation analysis tested the relationship between stigma, HIV, and anxiety. The odds of meeting threshold criteria for clinically relevant anxiety symptoms were two and a half times greater among caregivers living with HIV compared to nonaffected caregivers. The odds of meeting threshold criteria for clinically relevant anxiety symptoms were greatest among caregivers living with HIV and caring for a child orphaned by AIDS. Exposure to AIDS-related stigma partially mediated the relationship between HIV and anxiety. Interventions are needed to address caregiver psychological health, particularly among caregivers affected with both conditions of living with HIV and caring for a child orphaned by AIDS. PMID:24901465

  7. Models of care for orphaned and separated children and upholding children’s rights: cross-sectional evidence from western Kenya

    Science.gov (United States)

    2014-01-01

    Background Sub-Saharan Africa is home to approximately 55 million orphaned children. The growing orphan crisis has overwhelmed many communities and has weakened the ability of extended families to meet traditional care-taking expectations. Other models of care and support have emerged in sub-Saharan Africa to address the growing orphan crisis, yet there is a lack of information on these models available in the literature. We applied a human rights framework using the United Nations Convention on the Rights of the Child to understand what extent children’s basic human rights were being upheld in institutional vs. community- or family-based care settings in Uasin Gishu County, Kenya. Methods The Orphaned and Separated Children’s Assessments Related to their Health and Well-Being Project is a 5-year cohort of orphaned children and adolescents aged ≤18 year. This descriptive analysis was restricted to baseline data. Chi-Square test was used to test for associations between categorical /dichotomous variables. Fisher’s exact test was also used if some cells had expected value of less than 5. Results Included in this analysis are data from 300 households, 19 Charitable Children’s Institutions (CCIs) and 7 community-based organizations. In total, 2871 children were enrolled and had baseline assessments done: 1390 in CCI’s and 1481 living in households in the community. We identified and described four broad models of care for orphaned and separated children, including: institutional care (sub-classified as ‘Pure CCI’ for those only providing residential care, ‘CCI-Plus’ for those providing both residential care and community-based supports to orphaned children , and ‘CCI-Shelter’ which are rescue, detention, or other short-term residential support), family-based care, community-based care and self-care. Children in institutional care (95%) were significantly (p institutions were better able to provide an adequate standard of living. Conclusions

  8. Diversity and mobility in households with children orphaned by AIDS ...

    African Journals Online (AJOL)

    Tensions arising out of care arrangements and resource allocation were among the main reasons for the high degree of orphan mobility. The context of orphan mobility also highlighted the practical role the orphans were able to fulfil within the affected households. The findings show that orphan mobility is a social ...

  9. [Orphan drugs].

    Science.gov (United States)

    Golocorbin Kon, Svetlana; Vojinović, Aleksandra; Lalić-Popović, Mladena; Pavlović, Nebojsa; Mikov, Momir

    2013-01-01

    Drugs used for treatment of rare diseases are known worldwide under the term of orphan drugs because pharmaceutical companies have not been interested in "adopting" them, that is in investing in research, developing and producing these drugs. This kind of policy has been justified by the fact that these drugs are targeted for small markets, that only a small number of patients is available for clinical trials, and that large investments are required for the development of drugs meant to treat diseases whose pathogenesis has not yet been clarified in majority of cases. The aim of this paper is to present previous and present status of orphan drugs in Serbia and other countries. THE BEGINNING OF ORPHAN DRUGS DEVELOPMENT: This problem was first recognized by Congress of the United States of America in January 1983, and when the "Orphan Drug Act" was passed, it was a turning point in the development of orphan drugs. This law provides pharmaceutical companies with a series of reliefs, both financial ones that allow them to regain funds invested into the research and development and regulatory ones. Seven years of marketing exclusivity, as a type of patent monopoly, is the most important relief that enables companies to make large profits. There are no sufficient funds and institutions to give financial support to the patients. It is therefore necessary to make health professionals much more aware of rare diseases in order to avoid time loss in making the right diagnosis and thus to gain more time to treat rare diseases. The importance of discovery, development and production of orphan drugs lies in the number of patients whose life quality can be improved significantly by administration of these drugs as well as in the number of potential survivals resulting from the treatment with these drugs.

  10. Sustainable care improvement programs supported by undergraduate health care education

    NARCIS (Netherlands)

    C.H.M. Smits (Carolien); A. Harps (Annelies); A.M.V. Stoopendaal (Annemiek); A.M. Kamper (Ad); M.M.H. Strating (Mathilde); R.A. Bal (Roland)

    2017-01-01

    markdownabstractBackground: The Care for Better Region program was developed to achieve sustainable care improvement focusing onfall prevention. Key ingredients involved improvement teams developing and implementing a falls reduction plan, PracticeDevelopment; facilitation of

  11. A comparison of the wellbeing of orphans and abandoned children ages 6-12 in institutional and community-based care settings in 5 less wealthy nations.

    Directory of Open Access Journals (Sweden)

    Kathryn Whetten

    2009-12-01

    Full Text Available Leaders are struggling to care for the estimated 143,000,000 orphans and millions more abandoned children worldwide. Global policy makers are advocating that institution-living orphans and abandoned children (OAC be moved as quickly as possible to a residential family setting and that institutional care be used as a last resort. This analysis tests the hypothesis that institutional care for OAC aged 6-12 is associated with worse health and wellbeing than community residential care using conservative two-tail tests.The Positive Outcomes for Orphans (POFO study employed two-stage random sampling survey methodology in 6 sites across 5 countries to identify 1,357 institution-living and 1,480 community-living OAC ages 6-12, 658 of whom were double-orphans or abandoned by both biological parents. Survey analytic techniques were used to compare cognitive functioning, emotion, behavior, physical health, and growth. Linear mixed-effects models were used to estimate the proportion of variability in child outcomes attributable to the study site, care setting, and child levels and institutional versus community care settings. Conservative analyses limited the community living children to double-orphans or abandoned children.Health, emotional and cognitive functioning, and physical growth were no worse for institution-living than community-living OAC, and generally better than for community-living OAC cared for by persons other than a biological parent. Differences between study sites explained 2-23% of the total variability in child outcomes, while differences between care settings within sites explained 8-21%. Differences among children within care settings explained 64-87%. After adjusting for sites, age, and gender, institution vs. community-living explained only 0.3-7% of the variability in child outcomes.This study does not support the hypothesis that institutional care is systematically associated with poorer wellbeing than community care for OAC aged

  12. A comparison of the wellbeing of orphans and abandoned children ages 6-12 in institutional and community-based care settings in 5 less wealthy nations.

    Science.gov (United States)

    Whetten, Kathryn; Ostermann, Jan; Whetten, Rachel A; Pence, Brian W; O'Donnell, Karen; Messer, Lynne C; Thielman, Nathan M

    2009-12-18

    Leaders are struggling to care for the estimated 143,000,000 orphans and millions more abandoned children worldwide. Global policy makers are advocating that institution-living orphans and abandoned children (OAC) be moved as quickly as possible to a residential family setting and that institutional care be used as a last resort. This analysis tests the hypothesis that institutional care for OAC aged 6-12 is associated with worse health and wellbeing than community residential care using conservative two-tail tests. The Positive Outcomes for Orphans (POFO) study employed two-stage random sampling survey methodology in 6 sites across 5 countries to identify 1,357 institution-living and 1,480 community-living OAC ages 6-12, 658 of whom were double-orphans or abandoned by both biological parents. Survey analytic techniques were used to compare cognitive functioning, emotion, behavior, physical health, and growth. Linear mixed-effects models were used to estimate the proportion of variability in child outcomes attributable to the study site, care setting, and child levels and institutional versus community care settings. Conservative analyses limited the community living children to double-orphans or abandoned children. Health, emotional and cognitive functioning, and physical growth were no worse for institution-living than community-living OAC, and generally better than for community-living OAC cared for by persons other than a biological parent. Differences between study sites explained 2-23% of the total variability in child outcomes, while differences between care settings within sites explained 8-21%. Differences among children within care settings explained 64-87%. After adjusting for sites, age, and gender, institution vs. community-living explained only 0.3-7% of the variability in child outcomes. This study does not support the hypothesis that institutional care is systematically associated with poorer wellbeing than community care for OAC aged 6-12 in those

  13. [Orphan drugs and orphan diseases].

    Science.gov (United States)

    Campos-Castelló, J

    To define the concepts of orphan drugs and diseases, the current situation of clinical investigation of them, the attitude of the pharmaceutical industry and aspects of health legislation, especially in the European Community. We review the history of orphan drugs, the name used for those drugs, apparatus, biological agents and dietetic preparations used to treat diseases so rare as to affect 650 1,000 persons per million inhabitants. Approximately 5,000 of such disease have been identified. Of these, 80% are genetic disorders which are very common in neuropaediatrics, since 50% appear in childhood. Half of these disorders affect the nervous system but in general there are no relative preventive and/or therapeutic methods. In view of the expense involved, the pharmaceutical industry is loath to develop products which are only used in rare diseases. Society cannot tolerate the fact that these patients do not have access to medical progress. For this reason organizations of affected persons (especially the National Organization for Rare Diseases) put pressure on the USA authorities leading to the Orphan Drug Act of 1983 which was subsequently copied by other countries. Since January 2000 there is a similar Regulation in the European Community. Orphan diseases need to be diagnosed early by specialists who have had patients referred to them by general practitioners. However, initial recognition of the disorder is often delayed and late diagnosis occurs in 45% of these rare diseases which make up 10% of human illnesses. Currently over 150 orphan drugs are being used for over seven million patients. The struggle to treat rare diseases must continue, since its true importance is shown when suffered personally.

  14. The impact of the declining extended family support system on the education of orphans in Lesotho.

    Science.gov (United States)

    Tanga, Pius T

    2013-09-01

    This paper examines the impact of the weakening of the extended family on the education of double orphans in Lesotho through in-depth interviews with participants from 3 of the 10 districts in Lesotho. The findings reveal that in Lesotho the extended family has not yet disintegrated as the literature suggests. However, it shows signs of rupturing, as many orphans reported that they are being taken into extended family households, the incentive for these households being, presumably, the financial and other material assistance that they receive from the government and non-governmental organisations (NGOs) which supplements household income and material wellbeing. The findings show that financial and other assistance given by the government and NGOs have resulted in conflict between the orphans and caregivers. This has also prompted many extended families to shift responsibilities to the government and NGOs. Most of the extended households provided the orphans with poor living conditions, such as unhygienic houses, poor nutrition, and little or no provision of school materials, which has had a negative impact on the education of the orphans. The combined effects of economic crisis and HIV and AIDS have resulted in extended families not being able to care for the needs of the orphans adequately, whilst continuing to accept them into their households. It is recommended that although extended families are still accepting orphans, the government should strengthen and recognise the important role played by families and the communities in caring for these vulnerable children. The government should also introduce social grants for orphans and other vulnerable children and review the current meagre public assistance (R100) it provides for orphans and vulnerable children in Lesotho. Other stakeholders should concentrate on strengthening the capacity of families and communities through programmes and projects which could be more sustainable than the current handouts given by

  15. The motor development of orphaned children with and without HIV: Pilot exploration of foster care and residential placement

    Directory of Open Access Journals (Sweden)

    Ferguson Gillian

    2011-02-01

    Full Text Available Abstract Background The AIDS epidemic has lead to an increase in orphaned children who need residential care. It is known that HIV leads to delayed motor development. However, the impact of place of residence on motor function has not been investigated in the South African context. The aim of the study was therefore to establish if children in institutionalised settings performed better or worse in terms of gross motor function than their counterparts in foster care. A secondary objective was to compare the performance of children with HIV in these two settings with those of children who were HIV negative. Methods Forty-four children both with and without HIV, were recruited from institutions and foster care families in Cape Town. The Peabody Development Motor Scale (PDMS II was used to calculate the total motor quotient (TMQ at baseline and six months later. Comparisons of TMQ were made between residential settings and between children with and without HIV. Results Twenty-one children were infected with HIV and were significantly delayed compared to their healthy counterparts. Antiretroviral therapy was well managed among the group but did not appear to result in restoration of TMQ to normal over the study period. HIV status and place of residence emerged as a predictor of TMQ with children in residential care performing better than their counterparts in foster care. All children showed improvement over the six months of study. Conclusions Foster parents were well supported administratively in the community by social welfare services but their children might have lacked stimulation in comparison to those in institutional settings. This could have been due to a lack of resources and knowledge regarding child development. The assumption that foster homes provide a better alternative to institutions may not be correct in a resource poor community and needs to be examined further.

  16. The motor development of orphaned children with and without HIV: Pilot exploration of foster care and residential placement.

    Science.gov (United States)

    Jelsma, Jennifer; Davids, Nailah; Ferguson, Gillian

    2011-02-07

    The AIDS epidemic has lead to an increase in orphaned children who need residential care. It is known that HIV leads to delayed motor development. However, the impact of place of residence on motor function has not been investigated in the South African context. The aim of the study was therefore to establish if children in institutionalised settings performed better or worse in terms of gross motor function than their counterparts in foster care. A secondary objective was to compare the performance of children with HIV in these two settings with those of children who were HIV negative. Forty-four children both with and without HIV, were recruited from institutions and foster care families in Cape Town. The Peabody Development Motor Scale (PDMS II) was used to calculate the total motor quotient (TMQ) at baseline and six months later. Comparisons of TMQ were made between residential settings and between children with and without HIV. Twenty-one children were infected with HIV and were significantly delayed compared to their healthy counterparts. Antiretroviral therapy was well managed among the group but did not appear to result in restoration of TMQ to normal over the study period. HIV status and place of residence emerged as a predictor of TMQ with children in residential care performing better than their counterparts in foster care. All children showed improvement over the six months of study. Foster parents were well supported administratively in the community by social welfare services but their children might have lacked stimulation in comparison to those in institutional settings. This could have been due to a lack of resources and knowledge regarding child development. The assumption that foster homes provide a better alternative to institutions may not be correct in a resource poor community and needs to be examined further.

  17. Sustainable competitive advantage for accountable care organizations.

    Science.gov (United States)

    Macfarlane, Michael Alex

    2014-01-01

    In the current period of health industry reform, accountable care organizations (ACOs) have emerged as a new model for the delivery of high-quality and cost-effective healthcare. However, few ACOs operate in direct competition with one another, and the accountable care business model has yet to present a means of continually developing new marginal value for patients and network partners. With value-based purchasing and patient consumerism strengthening as market forces, ACOs must build organizational sustainability and competitive advantage to meet the value demands set by customers and competitors. This essay proposes a strategy, adapted from the disciplines of agile software development and Lean product development, through which ACOs can engage internal and external customers in the development of new products that will provide sustainability and competitive advantage to the organization by decreasing waste in development, promoting specialized knowledge, and closely targeting customer value.

  18. "They don't care what happens to us." The situation of double orphans heading households in Rakai District, Uganda

    Directory of Open Access Journals (Sweden)

    Musisi Seggane

    2009-09-01

    Full Text Available Abstract Background This article is based on information collected about the situation of double orphans who are heading households in Rakai District, Uganda. The information will be used as justification and guidance for planning actions to improve the situation of these and similar children. This research is thus the first step in an Action Research approach leading to specific interventions. The aim of this article is to describe the situation of these orphaned children, with an emphasis on the psychosocial challenges they face. Methods The study involved interviews, focus group discussions, observations and narratives. Forty-three heads of sibling-headed households participated. Information derived from informal discussions with local leaders is also included. The responses were analyzed using a modified version of Giorgi's psychological phenomenological method as described by Malterud 1. Results Factors such as lack of material resources, including food and clothes, limited possibilities to attend school on a regular basis, vast responsibilities and reduced possibilities for social interaction all contribute to causing worries and challenges for the child heads of households. Most of the children claimed that they were stigmatized and, to a great extent, ignored and excluded from their community. The Local Council Secretary ("Chairman" seemed to be the person in the community most responsible and helpful, but some chairmen seemed not to care at all. The children requested counseling for themselves as well as for community members because they experienced lack of understanding from other children and from adult community members. Conclusion The children experienced their situation as a huge and complex problem for themselves as well as for people in their villages. However, the situation might improve if actions focused on practical and psychological issues as well as on sensitization about the children's situation could be initiated. In

  19. Development of a Provisional Model to Improve Transitional Care for Female Adolescents with a Rare Genital Malformation as an Example for Orphan Diseases

    Directory of Open Access Journals (Sweden)

    Elisabeth Simoes

    2014-01-01

    Full Text Available Deficits of care exist during the transitional period, when young people with ongoing needs of support to achieve their physical, social, and psychological potential are entering adulthood. This study aims to develop a patient oriented, structured provisional model to improve transitional care for adolescents with Mayer-Rokitansky-Kuester-Hauser-Syndrome as an example for orphan diseases, where problems of access and continuity are even more complex. The study is funded by the German Federal Ministry of Education and Research (BMBF-Funding Code 01GY1125. The target patient group are young females with this disorder, treated at the Centre for Rare Genital Malformations in Women (ZSGF, University Hospital of Tuebingen. The study comprises five phases: an appraisal of literature, assessment of patients (n=25, parents’, partners’, and health and social care providers’ (n=24 needs and experienced deficits in care and support in a qualitative approach, construction of a provisional model via scenario technique, followed by communicative validation (including interested public, n=100, preference finding, and identification of patient-oriented quality aims for follow-up. Quantitative data from questionnaires and chart review (as sociodemographic data, nonresponder analysis, and preference rating are worked up for descriptive statistics. The results provide a platform for the development of future multidisciplinary transitional intervention programs in orphan diseases.

  20. Market uptake of orphan drugs--a European analysis.

    Science.gov (United States)

    Picavet, E; Annemans, L; Cleemput, I; Cassiman, D; Simoens, S

    2012-12-01

    Variations in market uptake of an orphan drug have important implications with respect to access to care and inequality of treatment. Therefore, the aim of this study was to quantify both the sales and volume uptake of orphan drugs in Europe and to assess whether a country's gross domestic product (GDP) and/or health technology assessment (HTA) influences the orphan drugs' market uptake. We analysed the numbers of orphan drugs launched and the sales and volume uptake for 17 orphan drugs in 23 European countries from 2001 until the beginning of 2010 using the IMS Health database. Countries were clustered based on GDP and the availability of a formal HTA-organization. The uptake of orphan drugs varied across European countries. The highest volumes and contributions of orphan drugs in the first year occurred in countries with a high GDP (and implicitly, a higher budget for healthcare), independently of the existence of an HTA-organization. In contrast, in countries with a low GDP, orphan drugs were less available when there was a formal HTA-organization. There, budgetary restrictions can cause the exclusion of less cost-effective orphan drugs. We observed substantial variation in the market uptake of orphan drugs. Such variation may have important implications with respect to access to care and inequality of treatment. The uptake of orphan drugs could be promoted through the clinical added value of orphan drugs (CAVOD) project and various conditional pricing and reimbursement mechanisms. © 2012 Blackwell Publishing Ltd.

  1. Sexual risk behavior among South African adolescents: is orphan status a factor?

    Science.gov (United States)

    Thurman, Tonya R; Brown, Lisanne; Richter, Linda; Maharaj, Pranitha; Magnani, Robert

    2006-11-01

    There is concern that orphans may be at particular risk of HIV infection due to earlier age of sexual onset and higher likelihood of sexual exploitation or abuse; however, there is limited empirical evidence examining this phenomenon. Utilizing data from 1,694 Black South African youth aged 14-18, of whom 31% are classified as orphaned, this analysis explores the relationship between orphan status and sexual risk. The analysis found both male and female orphans significantly more likely to have engaged in sex as compared to non-orphans (49% vs. 39%). After adjusting for socio-demographic variables, orphans were nearly one and half times more likely than non-orphans to have had sex. Among sexually active youth, orphans reported younger age of sexual intercourse with 23% of orphans having had sex by age 13 or younger compared to 15% of non-orphans. Programmatic implications of these findings for the care and protection of orphans are discussed.

  2. Sustainable development and quality health care.

    Science.gov (United States)

    1994-01-01

    On the occasion of Development Week in Canada, Dr. Remi Sogunro spoke in February, 1994, about the many achievements of quality primary health care and PLAN's strategy to achieve sustainability. In one generation, under-5 mortality has been cut by a third. Deaths from measles has been reduced from 2.5 million to 1 million a year. Skeletal deformities from polio also have been reduced from 1/2 million to less than 140,000. Despite all this, there is much more to be attained. 35,000 children under 5 die from preventable diseases every day in developing countries. The health community is working hard to address these silent emergencies. PLAN International's primary health care program targets the poor and undeserved populations where diseases are prevalent. The main focus of PLAN's programs are mothers and children who are most vulnerable to disease. Key interventions that PLAN gives priority to are childhood and maternal immunization programs, including pre- and post-natal care for mothers. Other interventions under PLAN's comprehensive primary health care program include: control of diarrheal diseases and acute respiratory infections, growth monitoring, nutrition and control of STDs and HIV/AIDS infection, water and sanitation, family planning information and educational services, and rehabilitation of the handicapped. "Go in search of people, begin with what they know, build on what they have," goes a Chinese proverb. This also summarizes PLAN's guiding principle for achieving sustainable development: the importance of investing in people. PLAN's programs in the field build partnerships and empower communities. PLAN's emphasis on institution-building and capacity-building with local institutions is an important part of organizational strategy to ensure sustained development. full text

  3. Sustainable drugs and global health care

    Directory of Open Access Journals (Sweden)

    Geoffrey A. Cordell

    2009-01-01

    Full Text Available Each day, Earth's finite resources are being depleted for energy, for material goods, for transportation, for housing, and for drugs. As we evolve scientifically and technologically, and as the population of the world rapidly approaches 7 billion and beyond, among the many issues with which we are faced is the continued availability of drugs for future global health care. Medicinal agents are primarily derived from two sources, synthetic and natural, or in some cases, as semi-synthetic compounds, a mixture of the two. For the developed world, efforts have been initiated to make drug production "greener", with milder reagents, shorter reaction times, and more efficient processing, thereby using less energy, and reactions which are more atom efficient, and generate fewer by-products. However, most of the world's population uses plants, in either crude or extract form, for their primary health care. There is relatively little discussion as yet, about the long term effects of the current, non-sustainable harvesting methods for medicinal plants from the wild, which are depleting these critical resources without concurrent initiatives to commercialize their cultivation. To meet future public health care needs, a paradigm shift is required in order to adopt new approaches using contemporary technology which will result in drugs being regarded as a sustainable commodity, irrespective of their source. In this presentation, several approaches to enhancing and sustaining the availability of drugs, both synthetic and natural, will be discussed, including the use of vegetables as chemical reagents, and the deployment of integrated strategies involving information systems, biotechnology, nanotechnology, and detection techniques for the development of medicinal plants with enhanced levels of bioactive agents.

  4. 76 FR 53912 - FDA's Public Database of Products With Orphan-Drug Designation: Replacing Non-Informative Code...

    Science.gov (United States)

    2011-08-30

    ... its public database of products that have received orphan-drug designation. The Orphan Drug Act... careful consideration of this matter, we have concluded that the Orphan Drug Act mandates that FDA... whom the Agency has not otherwise been able to notify that, under the Orphan Drug Act's notice...

  5. Development of a culture of sustainability in health care organizations.

    Science.gov (United States)

    Ramirez, Bernardo; West, Daniel J; Costell, Michael M

    2013-01-01

    This paper aims to examine the concept of sustainability in health care organizations and the key managerial competencies and change management strategies needed to implant a culture of sustainability. Competencies and management development strategies needed to engrain this corporate culture of sustainability are analyzed in this document. This paper draws on the experience of the authors as health care executives and educators developing managerial competencies with interdisciplinary and international groups of executives in the last 25 years, using direct observation, interviews, discussions and bibliographic evidence. With a holistic framework for sustainability, health care managers can implement strategies for multidisciplinary teams to respond to the constant change, fine-tune operations and successfully manage quality of care. Managers can mentor students and provide in-service learning experiences that integrate knowledge, skills, and abilities. Further empirical research needs to be conducted on these interrelated innovative topics. Health care organizations around the world are under stakeholders' pressure to provide high quality, cost-effective, accessible and sustainable services. Professional organizations and health care providers can collaborate with university graduate health management education programs to prepare competent managers in all the dimensions of sustainability. The newly designated accountable care organizations represent an opportunity for managers to address the need for sustainability. Sustainability of health care organizations with the holistic approach discussed in this paper is an innovative and practical approach to quality improvement that merits further development.

  6. Sustainability in care through an ethical practice model.

    Science.gov (United States)

    Nyholm, Linda; Salmela, Susanne; Nyström, Lisbet; Koskinen, Camilla

    2017-01-01

    While sustainability is a key concept in many different domains today, it has not yet been sufficiently emphasized in the healthcare sector. Earlier research shows that ethical values and evidence-based care models create sustainability in care practice. The aim of this study was to gain further understanding of the ethical values central to the realization of sustainability in care and to create an ethical practice model whereby these basic values can be made perceptible and active in care practice. Part of the ongoing "Ethical Sustainable Caring Cultures" research project, a hermeneutical application research design was employed in this study. Dialogues were used, where scientific researchers and co-researchers were given the opportunity to reflect on ethical values in relation to sustainability in care. An ethical practice model with ethos as its core was created from the results of the dialogues. In the model, ethos is encircled by the ethical values central to sustainability: dignity, responsibility, respect, invitation, and vows. The model can be used as a starting point for ethical conversations that support carers' reflections on the ethical issues seen in day-to-day care work and the work community, allowing ethical values to become visible throughout the entire care culture. It is intended as a tool whereby carers can more deeply understand an organization's common basic values and what they entail in regard to sustainability in care.

  7. Profiling the orphan enzymes

    Science.gov (United States)

    2014-01-01

    The emergence of Next Generation Sequencing generates an incredible amount of sequence and great potential for new enzyme discovery. Despite this huge amount of data and the profusion of bioinformatic methods for function prediction, a large part of known enzyme activities is still lacking an associated protein sequence. These particular activities are called “orphan enzymes”. The present review proposes an update of previous surveys on orphan enzymes by mining the current content of public databases. While the percentage of orphan enzyme activities has decreased from 38% to 22% in ten years, there are still more than 1,000 orphans among the 5,000 entries of the Enzyme Commission (EC) classification. Taking into account all the reactions present in metabolic databases, this proportion dramatically increases to reach nearly 50% of orphans and many of them are not associated to a known pathway. We extended our survey to “local orphan enzymes” that are activities which have no representative sequence in a given clade, but have at least one in organisms belonging to other clades. We observe an important bias in Archaea and find that in general more than 30% of the EC activities have incomplete sequence information in at least one superkingdom. To estimate if candidate proteins for local orphans could be retrieved by homology search, we applied a simple strategy based on the PRIAM software and noticed that candidates may be proposed for an important fraction of local orphan enzymes. Finally, by studying relation between protein domains and catalyzed activities, it appears that newly discovered enzymes are mostly associated with already known enzyme domains. Thus, the exploration of the promiscuity and the multifunctional aspect of known enzyme families may solve part of the orphan enzyme issue. We conclude this review with a presentation of recent initiatives in finding proteins for orphan enzymes and in extending the enzyme world by the discovery of new

  8. Nurse leaders as managers of ethically sustainable caring cultures.

    Science.gov (United States)

    Salmela, Susanne; Koskinen, Camilla; Eriksson, Katie

    2017-04-01

    The aim of this study was to identify the distinctive foundations of the care culture and how nurse leaders (NL) can manage and strengthen these in a quest for ethically sustainable caring cultures. Sustainability presupposes an ethical leadership, a management of the good care and a well-educated staff, but research on NLs as managers of ethically sustainable caring cultures is not available. The study has a quantitative design with elements of a qualitative research approach. Data were collected through a web-based questionnaire sent to staff at eight selected units at a hospital in western Finland during September 2013; the reply rate was 32%. The data material was comprised of opinion questions, the ranking of values and two open-ended questions on lodestars in care and ethical principles in care work. NLs manage a care culture that rests on a solid foundation, where staff are co-creators of an ethically sustainable caring culture that includes good traditions for the praxis of care. NLs as managers are therefore responsible for realizing and passing on ethically sustainable caring cultures and creating prerequisites for staff's growth and development. The basis of good care, patient safety and sustainability is comprised of ethics with a respectful and dignified care that is evidence-based and economically stable. Through their management NLs have a responsibility to nurture and protect the core of caring and create contextual, professional and cultural prerequisites to maintain the core and art of caring as well as care staff's ethical and professional competence. © 2016 John Wiley & Sons Ltd.

  9. Emergent themes in the sustainability of primary health care innovation.

    Science.gov (United States)

    Sibthorpe, Beverly M; Glasgow, Nicholas J; Wells, Robert W

    2005-11-21

    A synthesis of the findings of the five studies of sustainability of primary health care innovation across six domains (political, institutional, financial, economic, client and workforce) yielded three main themes. These were: the importance of social relationships, networks and champions; the effect of political, financial and societal forces; and the motivation and capacity of agents within the system. The need for routine assessment of the sustainability of primary health care innovations is discussed. Given the dearth of literature on the sustainability of primary health care innovation, there is potential to develop a program of research directed towards a future synthesis of evidence.

  10. Health care financing and the sustainability of health systems

    OpenAIRE

    Liaropoulos, Lycourgos; Goranitis, Ilias

    2015-01-01

    The economic crisis brought an unprecedented attention to the issue of health system sustainability in the developed world. The discussion, however, has been mainly limited to “traditional” issues of cost-effectiveness, quality of care, and, lately, patient involvement. Not enough attention has yet been paid to the issue of who pays and, more importantly, to the sustainability of financing. This fundamental concept in the economics of health policy needs to be reconsidered carefully. In a glo...

  11. Constraints to educational opportunities of orphans: a community-based study from northern Uganda.

    Science.gov (United States)

    Oleke, C; Blystad, A; Fylkesnes, K; Tumwine, J K

    2007-03-01

    The objective of this article is to assess constraints on educational opportunities of orphans cared for within the extended family system in Lira district, northern Uganda. The data were collected through: review of school census records; ethnographic fieldwork; in-depth interviews with 21 community leaders, 45 heads of households caring for orphans and 35 orphans. Focus group discussions were held with men and women caring for orphans, community leaders and orphans. A household survey was conducted in 402 households caring for orphans. We found that very poor widows living on less than half a dollar per day head 48% of the households caring for orphans. The elderly heads of households were 3 times more likely to have all the children in their household in schools than the younger ones. Furthermore, the widowed and single heads of households were more likely to have all orphans in school than the married, and households that received external support offered better educational opportunities. Poverty, as indicated by lack of food while at school and heavy involvement of orphans in domestic labour, were identified as major constraints on orphans' schooling. There is an urgent need to support orphans' education in northern Uganda beyond the current Universal Primary Education efforts. The most vulnerable households need to be targeted, and the communities need to be sensitized to child labour, school meals and sex abuse.

  12. Asset ownership among households caring for orphans and vulnerable children in rural Zimbabwe: the influence of ownership on children's health and social vulnerabilities.

    Science.gov (United States)

    Crea, Thomas M; Lombe, Margaret; Robertson, Laura A; Dumba, Lovemore; Mushati, Phyllis; Makoni, J C; Mavise, Gideon; Eaton, Jeffrey W; Munatsi, Brighton; Nyamukapa, Constance A; Gregson, Simon

    2013-01-01

    The high prevalence of human immunodeficiency virus/acquired immune deficiency syndrome in sub-Saharan Africa has resulted in a dramatic increase in orphans and vulnerable children (OVC) over the past decade. These children typically rely on extended family networks for support, but the magnitude of the crisis has resulted in traditional familial networks becoming overwhelmed and more economically and socially vulnerable. Previous research consistently demonstrates the positive influence of household asset ownership on children's well-being. Using data from impoverished households caring for OVC in rural Manicaland Province, Zimbabwe, this study explores the influence of household asset ownership on OVC health vulnerability (HV) and social vulnerability (SV). Findings indicate that asset ownership is associated with significantly lower SV, in terms of school attendance and birth registration. Yet, assets do not emerge as a direct influence of OVC HV as measured by disease and chronic illness, although having a chronically ill adult in the household increases HV. These findings suggest that asset ownership, specifically a combination of fixed and movable assets, may offset the influence of other risk factors for children's SV.

  13. Civic engagement among orphans and non-orphans in five low- and middle-income countries.

    Science.gov (United States)

    Gray, Christine L; Pence, Brian W; Messer, Lynne C; Ostermann, Jan; Whetten, Rachel A; Thielman, Nathan M; O'Donnell, Karen; Whetten, Kathryn

    2016-10-11

    Communities and nations seeking to foster social responsibility in their youth are interested in understanding factors that predict and promote youth involvement in public activities. Orphans and separated children (OSC) are a vulnerable population whose numbers are increasing, particularly in resource-poor settings. Understanding whether and how OSC are engaged in civic activities is important for community and world leaders who need to provide care for OSC and ensure their involvement in sustainable development. The Positive Outcomes for Orphans study (POFO) is a multi-country, longitudinal cohort study of OSC randomly sampled from institution-based care and from family-based care, and of non-OSC sampled from the same study regions. Participants represent six sites in five low-and middle-income countries. We examined civic engagement activities and government trust among subjects > =16 years old at 90-month follow-up (approximately 7.5 years after baseline). We calculated prevalences and estimated the association between key demographic variables and prevalence of regular volunteer work using multivariable Poisson regression, with sampling weights to accounting for the complex sampling design. Among the 1,281 POFO participants > =16 who were assessed at 90-month follow-up, 45 % participated in regular community service or volunteer work; two-thirds of those volunteers did so on a strictly voluntary basis. While government trust was fairly high, at approximately 70 % for each level of government, participation in voting was only 15 % among those who were > =18 years old. We did not observe significant associations between demographic characteristics and regular volunteer work, with the exception of large variation by study site. As the world's leaders grapple with the many competing demands of global health, economic security, and governmental stability, the participation of today's youth in community and governance is essential for

  14. Sustaining Health Care Interventions to Achieve Quality Care: What We Can Learn From Rapid Response Teams.

    Science.gov (United States)

    Stolldorf, Deonni P

    Rapid response team (RRT) adoption and implementation are associated with improved quality of care of patients who experience an unanticipated medical emergency. The sustainability of RRTs is vital to achieve long-term benefits of these teams for patients, staff, and hospitals. Factors required to achieve RRT sustainability remain unclear. This study examined the relationship between sustainability elements and RRT sustainability in hospitals that have previously implemented RRTs.

  15. [Health care system sustainability and the contribution of emergency departments].

    Science.gov (United States)

    Urbanos-Garrido, Rosa María; López-Valcárcel, Beatriz G

    2015-06-01

    The purpose of this paper is to describe the main proposals for ensuring national health service sustainability, in the light of a review of the most relevant diagnostic reports and guidelines published since the onset of the economic crisis. The following proposals are among the most frequently mentioned in the literature: selective financing of technology, reorganization to provide more care for chronic conditions and better coordination between levels of care and the network of social and health care services, and the reinforcement of primary care. Also commonly suggested is the reform of health care governance. Likewise, the authors briefly examine the measures adopted to date to promote the system's sustainability and discuss how the emergency department can further this aim.

  16. Three-year change in the wellbeing of orphaned and separated children in institutional and family-based care settings in five low- and middle-income countries.

    Science.gov (United States)

    Whetten, Kathryn; Ostermann, Jan; Pence, Brian W; Whetten, Rachel A; Messer, Lynne C; Ariely, Sumedha; O'Donnell, Karen; Wasonga, Augustine I; Vann, Vanroth; Itemba, Dafrosa; Eticha, Misganaw; Madan, Ira; Thielman, Nathan M

    2014-01-01

    With more than 2 million children living in group homes, or "institutions", worldwide, the extent to which institution-based caregiving negatively affects development and wellbeing is a central question for international policymakers. A two-stage random sampling methodology identified community representative samples of 1,357 institution-dwelling orphaned and separated children (OSC) and 1,480 family-dwelling OSC aged 6-12 from 5 low and middle income countries. Data were collected from children and their primary caregivers. Survey-analytic techniques and linear mixed effects models describe child wellbeing collected at baseline and at 36 months, including physical and emotional health, growth, cognitive development and memory, and the variation in outcomes between children, care settings, and study sites. At 36-month follow-up, institution-dwelling OSC had statistically significantly higher height-for-age Z-scores and better caregiver-reported physical health; family-dwelling OSC had fewer caregiver-reported emotional difficulties. There were no statistically significant differences between the two groups on other measures. At both baseline and follow-up, the magnitude of the differences between the institution- and family-dwelling groups was small. Relatively little variation in outcomes was attributable to differences between sites (11-27% of total variation) or care settings within sites (8-14%), with most variation attributable to differences between children within settings (60-75%). The percent of variation in outcomes attributable to the care setting type, institution- versus family-based care, ranged from 0-4% at baseline, 0-3% at 36-month follow-up, and 0-4% for changes between baseline and 36 months. These findings contradict the hypothesis that group home placement universally adversely affects child wellbeing. Without substantial improvements in and support for family settings, the removal of institutions, broadly defined, would not significantly

  17. Three-year change in the wellbeing of orphaned and separated children in institutional and family-based care settings in five low- and middle-income countries.

    Directory of Open Access Journals (Sweden)

    Kathryn Whetten

    Full Text Available With more than 2 million children living in group homes, or "institutions", worldwide, the extent to which institution-based caregiving negatively affects development and wellbeing is a central question for international policymakers.A two-stage random sampling methodology identified community representative samples of 1,357 institution-dwelling orphaned and separated children (OSC and 1,480 family-dwelling OSC aged 6-12 from 5 low and middle income countries. Data were collected from children and their primary caregivers. Survey-analytic techniques and linear mixed effects models describe child wellbeing collected at baseline and at 36 months, including physical and emotional health, growth, cognitive development and memory, and the variation in outcomes between children, care settings, and study sites.At 36-month follow-up, institution-dwelling OSC had statistically significantly higher height-for-age Z-scores and better caregiver-reported physical health; family-dwelling OSC had fewer caregiver-reported emotional difficulties. There were no statistically significant differences between the two groups on other measures. At both baseline and follow-up, the magnitude of the differences between the institution- and family-dwelling groups was small. Relatively little variation in outcomes was attributable to differences between sites (11-27% of total variation or care settings within sites (8-14%, with most variation attributable to differences between children within settings (60-75%. The percent of variation in outcomes attributable to the care setting type, institution- versus family-based care, ranged from 0-4% at baseline, 0-3% at 36-month follow-up, and 0-4% for changes between baseline and 36 months.These findings contradict the hypothesis that group home placement universally adversely affects child wellbeing. Without substantial improvements in and support for family settings, the removal of institutions, broadly defined, would not

  18. Facilitating HIV testing, care and treatment for orphans and vulnerable children aged five years and younger through community-based early childhood development playcentres in rural Zimbabwe

    Directory of Open Access Journals (Sweden)

    Karen Webb

    2012-07-01

    Full Text Available Introduction: Early diagnosis of children living with HIV is a prerequisite for accessing timely paediatric HIV care and treatment services and for optimizing treatment outcomes. Testing of HIV-exposed infants at 6 weeks and later is part of the national prevention of mother to child transmission (PMTCT of HIV programme in Zimbabwe, but many opportunities to test infants and children are being missed. Early childhood development (ECD playcentres can act as an entry point providing multiple health and social services for orphans and vulnerable children (OVC under 5 years, including facilitating access to HIV treatment and care. Methods: Sixteen rural community-based, community-run ECD playcentres were established to provide health, nutritional and psychosocial support for OVC aged 5 years and younger exposed to or living with HIV, coupled with family support groups (FSGs for their families/caregivers. These centres were located in close proximity to health centres giving access to nurse-led monitoring of 697 OVC and their caregivers. Community mobilisers identified OVC within the community, supported their registration process and followed up defaulters. Records profiling each child's attendance, development and health status (including illness episodes, vaccinations and HIV status were compiled at the playcentres and regularly reviewed, updated and acted upon by nurse supervisors. Through FSGs, community cadres and a range of officers from local services established linkages and built the capacity of parents/caregivers and communities to provide protection, aid psychosocial development and facilitate referral for treatment and support. Results: Available data as of September 2011 for 16 rural centres indicate that 58.8% (n=410 of the 697 children attending the centres were tested for HIV; 18% (n=74 tested positive and were initiated on antibiotic prophylaxis. All those deemed eligible for antiretroviral therapy were commenced on treatment and

  19. Creating A Sustainable Model of Spine Care in Underserved Communities

    DEFF Research Database (Denmark)

    Haldeman, Scott; Nordin, Margareta; Outerbridge, Geoff

    2015-01-01

    adequate care, World Spine Care (WSC) was established to "improve lives in underserved communities through sustainable, integrated, evidence-based, spinal care." WSC is comprised of volunteers and institutions from 6 continents and several countries, and incorporates a Board of Directors, an executive......) facilitation of opportunities for training graduate students in a variety of health-related fields. World Spine Care has (a) recognized the enormous need to establish clinical programs aimed at easing the suffering and disability associated with spinal disorders in resource-poor communities, (b) shown...

  20. Family discussions on life-sustaining interventions in neurocritical care.

    Science.gov (United States)

    Adil, M M; Larriviere, D

    2017-01-01

    Approximately 20% of all deaths in the USA occur in the intensive care unit (ICU) and the majority of ICU deaths involves decision of de-escalation of life-sustaining interventions. Life-sustaining interventions may include intubation and mechanical ventilation, artificial nutrition and hydration, antibiotic treatment, brain surgery, or vasoactive support. Decision making about goals of care can be defined as an end-of-life communication and the decision-making process between a clinician and a patient (or a surrogate decision maker if the patient is incapable) in an institutional setting to establish a plan of care. This process includes deciding whether to use life-sustaining treatments. Therefore, family discussion is a critical element in the decision-making process throughout the patient's stay in the neurocritical care unit. A large part of care in the neurosciences intensive care unit is discussion of proportionality of care. This chapter provides a stepwise approach to hold these conferences and discusses ways to do it effectively. © 2017 Elsevier B.V. All rights reserved.

  1. Safeguarding inheritance and enhancing the resilience of orphaned ...

    African Journals Online (AJOL)

    This article explores the resilience of orphaned young people in safeguarding physical assets (land and property) inherited from their parents and sustaining their households without a co-resident adult relative. Drawing on the concept of resilience and the sustainable livelihoods framework, the article analyses the findings ...

  2. World health dilemmas: Orphan and rare diseases, orphan drugs and orphan patients

    Science.gov (United States)

    Kontoghiorghe, Christina N; Andreou, Nicholas; Constantinou, Katerina; Kontoghiorghes, George J

    2014-01-01

    According to global annual estimates hunger/malnutrition is the major cause of death (36 of 62 million). Cardiovascular diseases and cancer (5.44 of 13.43 million) are the major causes of death in developed countries, while lower respiratory tract infections, human immunodeficiency virus infection/acquired immunodeficiency syndrome, diarrhoeal disease, malaria and tuberculosis (10.88 of 27.12 million) are the major causes of death in developing countries with more than 70% of deaths occurring in children. The majority of approximately 800 million people with other rare diseases, including 100000 children born with thalassaemia annually receive no treatment. There are major ethical dilemmas in dealing with global health issues such as poverty and the treatment of orphan and rare diseases. Of approximately 50000 drugs about 10% are orphan drugs, with annual sales of the latter approaching 100 billion USD. In comparison, the annual revenue in 2009 from the top 12 pharmaceutical companies in Western countries was 445 billion USD and the top drug, atorvastatin, reached 100 billion USD. In the same year, the total government expenditure for health in the developing countries was 410 billion USD with only 6%-7% having been received as aid from developed countries. Drugs cost the National Health Service in the United Kingdom more than 20 billion USD or 10% of the annual health budget. Uncontrollable drug prices and marketing policies affect global health budgets, clinical practice, patient safety and survival. Fines of 5.3 billion USD were imposed on two pharmaceutical companies in the United States, the regulatory authority in France was replaced and clinicians were charged with bribery in order to overcome recent illegal practises affecting patient care. High expenditure for drug development is mainly related to marketing costs. However, only 2 million USD was spent developing the drug deferiprone (L1) for thalassaemia up to the stage of multicentre clinical trials. The

  3. A Just Distribution of Health Care in the Case of Orphan Medicinal Products: Aligning the Interests of European Economic Integration and National Welfare Policy

    DEFF Research Database (Denmark)

    Faeh, Andrea

    2012-01-01

    , they are not necessarily available to the patient. This is due to the fact that decisions about the price and the reimbursement of these (very expensive) products are made at the national level. This article draws up a framework for distributing limited health resources where medicinal products for rare diseases (orphan...

  4. Pricing and reimbursement of orphan drugs: the need for more transparency

    Directory of Open Access Journals (Sweden)

    Simoens Steven

    2011-06-01

    Full Text Available Abstract Pricing and reimbursement of orphan drugs are an issue of high priority for policy makers, legislators, health care professionals, industry leaders, academics and patients. This study aims to conduct a literature review to provide insight into the drivers of orphan drug pricing and reimbursement. Although orphan drug pricing follows the same economic logic as drug pricing in general, the monopolistic power of orphan drugs results in high prices: a orphan drugs benefit from a period of marketing exclusivity; b few alternative health technologies are available; c third-party payers and patients have limited negotiating power; d manufacturers attempt to maximise orphan drug prices within the constraints of domestic pricing and reimbursement policies; and e substantial R&D costs need to be recouped from a small number of patients. Although these conditions apply to some orphan drugs, they do not apply to all orphan drugs. Indeed, the small number of patients treated with an orphan drug and the limited economic viability of orphan drugs can be questioned in a number of cases. Additionally, manufacturers have an incentive to game the system by artificially creating monopolistic market conditions. Given their high price for an often modest effectiveness, orphan drugs are unlikely to provide value for money. However, additional criteria are used to inform reimbursement decisions in some countries. These criteria may include: the seriousness of the disease; the availability of other therapies to treat the disease; and the cost to the patient if the medicine is not reimbursed. Therefore, the maximum cost per unit of outcome that a health care payer is willing to pay for a drug could be set higher for orphan drugs to which society attaches a high social value. There is a need for a transparent and evidence-based approach towards orphan drug pricing and reimbursement. Such an approach should be targeted at demonstrating the relative effectiveness

  5. Health care financing and the sustainability of health systems.

    Science.gov (United States)

    Liaropoulos, Lycourgos; Goranitis, Ilias

    2015-09-15

    The economic crisis brought an unprecedented attention to the issue of health system sustainability in the developed world. The discussion, however, has been mainly limited to "traditional" issues of cost-effectiveness, quality of care, and, lately, patient involvement. Not enough attention has yet been paid to the issue of who pays and, more importantly, to the sustainability of financing. This fundamental concept in the economics of health policy needs to be reconsidered carefully. In a globalized economy, as the share of labor decreases relative to that of capital, wage income is increasingly insufficient to cover the rising cost of care. At the same time, as the cost of Social Health Insurance through employment contributions rises with medical costs, it imperils the competitiveness of the economy. These reasons explain why spreading health care cost to all factors of production through comprehensive National Health Insurance financed by progressive taxation of income from all sources, instead of employer-employee contributions, protects health system objectives, especially during economic recessions, and ensures health system sustainability.

  6. Orphan drug regulations. Final rule.

    Science.gov (United States)

    2013-06-12

    The Food and Drug Administration (FDA) is issuing final regulations amending the 1992 Orphan Drug Regulations issued to implement the Orphan Drug Act. These amendments are intended to clarify regulatory provisions and make minor improvements to address issues that have arisen since those regulations were issued.

  7. Drug repositioning for orphan diseases.

    Science.gov (United States)

    Sardana, Divya; Zhu, Cheng; Zhang, Minlu; Gudivada, Ranga C; Yang, Lun; Jegga, Anil G

    2011-07-01

    The need and opportunity to discover therapeutics for rare or orphan diseases are enormous. Due to limited prevalence and/or commercial potential, of the approximately 6000 orphan diseases (defined by the FDA Orphan Drug Act as drug development is complicated, time-consuming and expensive with extremely low success rates only adds to the low rate of therapeutics available for orphan diseases. An alternative and efficient strategy to boost the discovery of orphan disease therapeutics is to find connections between an existing drug product and orphan disease. Drug Repositioning or Drug Repurposing--finding a new indication for a drug--is one way to maximize the potential of a drug. The advantages of this approach are manifold, but rational drug repositioning for orphan diseases is not trivial and poses several formidable challenges--pharmacologically and computationally. Most of the repositioned drugs currently in the market are the result of serendipity. One reason the connection between drug candidates and their potential new applications are not identified in an earlier or more systematic fashion is that the underlying mechanism 'connecting' them is either very intricate and unknown or indirect or dispersed and buried in an ever-increasing sea of information, much of which is emerging only recently and therefore is not well organized. In this study, we will review some of these issues and the current methodologies adopted or proposed to overcome them and translate chemical and biological discoveries into safe and effective orphan disease therapeutics.

  8. Environmental sustainability in the intensive care unit: challenges and solutions.

    Science.gov (United States)

    Huffling, Katie; Schenk, Elizabeth

    2014-01-01

    In acute care practice sites, the intensive care unit (ICU) is one of the most resource-intense environments. Replete with energy-intensive equipment, significant waste production, and multiple toxic chemicals, ICUs contribute to environmental harm and may inadvertently have a negative impact on the health of patients, staff, and visitors. This article evaluates the ICU on four areas of environmental sustainability: energy, waste, toxic chemicals, and healing environment and provides concrete actions ICU nurses can take to decrease environmental health risks in the ICU. Case studies of nurses making changes within their hospital practice are also highlighted, as well as resources for nurses starting to make changes at their health care institutions.

  9. An evaluation of Orphans and Vulnerable Children (OVC ...

    African Journals Online (AJOL)

    The Orphans and Vulnerable Children (OVC) programme was developed from the home-based care programme to provide children under the age of 18 years with support in core service areas such as HIV prevention education, access to anti-retroviral treatment and psychological care. The aim of this study was to evaluate ...

  10. Sustainable Living in Long-Term Care: For People with Dementia/Alzheimer's

    Science.gov (United States)

    Simmons, Daniela

    2011-01-01

    Nonhome-based long-term care sustainable living arrangements for elderly people with Alzheimer's is presented. Characteristics contributing to sustainability are discussed. The ultimate goal in sustainable design for older adult communities is a people-centered model of care in environments that improve their quality of life. Without sustainable…

  11. A SUSTAINABLE HEALTH CARE SYSTEM REQUIRES MANAGEMENT TRANSFORMATION

    Directory of Open Access Journals (Sweden)

    Kanellopoulos Dimitros

    2011-12-01

    Full Text Available In order to be the health care system sustainable , management transformations must be based on very precise diagnostic analysis that includes complete and current information. It is necessary to implement an information system that collects information in real time, that watches the parameters that significantly influence the sustainability of the system. Such an information system should point out a radiography(a scan of the system at some time under following aspects:: 1. An overview of system; 2 An overview of the economic situation; 3 A technical presentation ;4. A legal overview; 5. A social overview ; 6. A management overview .Based on these Xrays of the health system, it outlines a series of conclusions and recommendations together with a SWOT analysis that highlights the potential internal (strengths and weaknesses and external potential (opportunities and threats. Based on this analysis and recommendations, the management is going to redesign the system in order to be adapted to the changing environmental requirements. Management transformation is recommended to be by following steps. :1. The development of a new management system that would make a positive change in the health care system 2. Implementation of the new management system 3. Assessment of the changes

  12. Inverse association of natural mentoring relationship with distress mental health in children orphaned by AIDS

    Directory of Open Access Journals (Sweden)

    Munakata Tsunetsugu

    2010-01-01

    Full Text Available Abstract Background The magnitude of the AIDS-orphaned children crisis in sub-Saharan Africa has so overstretched the resource of most families that the collapse of fostering in the sub-region seems imminent (UNICEF, 2003, fueling the need for a complementary/alternative care. This paper examines the probability of the natural mentoring care to ameliorate distress mental health in children orphaned by AIDS. Methods 952 children, mean age about 14 years, from local community schools and child-care centers in Kampala (Uganda and Mafikeng/Klerksdorp (South Africa towns participated in the study. The design has AIDS-orphaned group (n = 373 and two control groups: Other-causes orphaned (n = 287 and non-orphaned (n = 290 children. We use measures of child abuse, depression, social discrimination, anxiety, parental/foster care, self-esteem, and social support to estimate mental health. Natural mentoring care is measured with the Ragins and McFarlin (1990 Mentor Role Instrument as adapted. Results AIDS-orphaned children having a natural mentor showed significant decreased distress mental health factors. Similar evidence was not observed in the control groups. Also being in a natural mentoring relationship inversely related to distress mental health factors in the AIDS-orphaned group, in particular. AIDS-orphaned children who scored high mentoring relationship showed significant lowest distress mental health factors that did those who scored moderate and low mentoring relationship. Conclusions Natural mentoring care seems more beneficial to ameliorate distress mental health in AIDS-orphaned children (many of whom are double-orphans, having no biological parents than in children in the control groups.

  13. Cultural practices and sexual risk behaviour among adolescent orphans and non-orphans: a qualitative study on perceptions from a community in Western Kenya.

    Science.gov (United States)

    Juma, Milka; Askew, Ian; Alaii, Jane; Bartholomew, L Kay; van den Borne, Bart

    2014-01-27

    This study explored community perceptions of cultural beliefs and practices that may increase sexual risk behaviour of adolescents, to understand more about meaning they hold within the culture and how they expose adolescent orphans and non-orphans to higher risks in a high HIV and teenage pregnancy prevalence context. Using a qualitative descriptive cross-sectional design 14 focus group discussions were conducted with 78 adolescents and 68 parents/guardians purposively selected to represent their communities. Thirteen key informant interviews were also conducted with community leaders, health care and child welfare workers, and adolescents who were also selected purposively. The two methods were used to explore how cultural beliefs and practices predispose adolescent orphans and non- orphans to risky sexual behaviours. Data were analysed through line-by-line coding, grouped into families and retrieved as themes and sub-themes. Identified cultural practices that predisposed adolescents orphans and non-orphans to risky sexual behaviours included: adolescent sleeping arrangements, funeral ceremonies, replacing a deceased married daughter with her younger sister in marriage, widow inheritance among boys, early marriage among girls, and preference for boys/sons. Cultural risks perceived to equally affect both orphans and non-orphans were sleeping arrangements, funeral ceremonies, and sister replacement. Factors associated more with orphans than non-orphans were widow inheritance among boys and a preference for boy over girl children. Adolescent sexual risk reduction programs should be developed considering the specific cultural context, using strategies that empower communities to challenge the widely accepted cultural norms that may predispose young people in general to sexual risks while targeting those that unequally influence orphans.

  14. Caregiver role in HIV medication adherence among HIV-infected orphans in Tanzania.

    Science.gov (United States)

    Gichane, Margaret W; Sullivan, Kristen A; Shayo, Aisa M; Mmbaga, Blandina T; O' Donnell, Karen; Cunningham, Coleen K; Dow, Dorothy E

    2017-10-23

    Youth living with HIV in sub-Saharan Africa face numerous challenges in adhering to HIV treatment. The AIDS epidemic has left many of these youth orphaned due to AIDS-related death of one or both parents. It is imperative to understand the family context of youth living with HIV in order to develop responsive interventions to improve adherence to antiretroviral therapy. We conducted qualitative in-depth interviews with 17 HIV-infected AIDS orphans, ages 13-24 years, screened positive for mental health difficulties according to the Patient Health Questionaire-9 (PHQ-9) or UCLA PTSD Reaction Index (PTSD-RI), and receiving outpatient HIV care at an adolescent medical clinic in Moshi, Tanzania. Treatment-related support varied by orphan status. Paternal orphans cared for by their biological mothers and maternal orphans cared for by grandmothers described adherence support such as assistance taking medication and attending clinic. Double orphans did not report adherence support. Several maternal and double orphans faced direct interference from caregivers and household members when they attempted to take their medications. Caregivers play a significant role in treatment adherence and must be considered in interventions to increase medication adherence in HIV-infected orphans. Findings from this study informed caregiver participation in Sauti ya Vijana (The Voice of Youth), a mental health intervention for youth living with HIV in Tanzania.

  15. Orphan drugs for rare diseases: is it time to revisit their special market access status?

    Science.gov (United States)

    Simoens, Steven; Cassiman, David; Dooms, Marc; Picavet, Eline

    2012-07-30

    Orphan drugs are intended for diseases with a very low prevalence, and many countries have implemented legislation to support market access of orphan drugs. We argue that it is time to revisit the special market access status of orphan drugs. Indeed, evidence suggests that there is no societal preference for treating rare diseases. Although society appears to assign a greater value to severity of disease, this criterion is equally relevant to many common diseases. Furthermore, the criterion of equity in access to treatment, which underpins orphan drug legislation, puts more value on health improvement in rare diseases than in common diseases and implies that population health is not maximized. Finally, incentives for the development, pricing and reimbursement of orphan drugs have created market failures, including monopolistic prices and the artificial creation of rare diseases. We argue that, instead of awarding special market access status to orphan drugs, there is scope to optimize research and development (R&D) of orphan drugs and to control prices of orphan drugs by means of, for example, patent auctions, advance purchase commitments, pay-as-you-go schemes and dose-modification studies. Governments should consider carefully the right incentive strategy for R&D of orphan drugs in rare diseases.

  16. Developing, implementing and sustaining an end-of-life care programme in residential care homes.

    Science.gov (United States)

    Kinley, Julie; Stone, Louisa; Butt, Anna; Kenyon, Barbara; Lopes, Nuno Santos

    2017-04-02

    In the UK 15.8% of people aged 85 years and over live in a care home or long-stay hospital setting. With the projection of an ageing population it is realistic to expect that the number of people both living and dying in all care homes will increase. This article describes the implementation of an end-of-life care programme to empower staff to meet their resident's end-of-life care needs. To implement an end-of-life care programme, namely the 'Steps to Success' programme, in residential care homes. Measurable outcomes were collected through audit. Over four years audit of all deceased residents' records in the participating homes was collected. This shows an increase of home deaths in 2011/12 to 2014/15 from 44% (n=8/18) within four residential care homes to 64% (n=74/115) in 23 residential care homes with corresponding increase in advance care plan discussions and completion of 'do not attempt cardiopulmonary resuscitation' forms. Achieving change is any organisation let alone sustaining such change is not easy. Six factors enabled this to occur and these should be considered when implementing other such initiatives in residential care homes.

  17. Orphan drug development.

    Science.gov (United States)

    Pastores, Gregory M; Gupta, Punita

    2013-11-01

    Commercial treatment for a lysosomal storage disorder (LSD; i.e., Gaucher disease) became available in 1991 as a consequence of collaborative efforts between the National Institutes of Health and a biotechnology company, Genzyme Corporation, fostered by the Orphan Drug Act. (ODA, 1983) Other therapies were subsequently introduced for other LSDs (e.g., for Fabry disease) through ODA-driven incentives, as combined projects between academia and industry, facilitated by the Bayh-Dole Act (1980). Today, several enzyme therapies are available and other treatment options are anticipated, including small molecular drugs which inhibit substrate synthesis or act as pharmacologic chaperones. Disease-specific therapies has modified disease course to varying extents, and on-going data collection through registry/observational programs are in place to characterize both long-term safety and efficacy. Aspects of disease that remain challenging include those resulting from bone and brain involvement, which may necessitate novel therapeutic strategies. Issues related to high cost of therapy and access also remain to be addressed.

  18. Improving end-of-life care in nursing homes: implementation and evaluation of an intervention to sustain quality of care.

    Science.gov (United States)

    Finucane, Anne M; Stevenson, Barbara; Moyes, Rhona; Oxenham, David; Murray, Scott A

    2013-09-01

    Internationally, policy calls for care homes to provide reliably good end-of-life care. We undertook a 20-month project to sustain palliative care improvements achieved by a previous intervention. To sustain a high standard of palliative care in seven UK nursing care homes using a lower level of support than employed during the original project and to evaluate the effectiveness of this intervention. Two palliative care nurse specialists each spent one day per week providing support and training to seven care homes in Scotland, United Kingdom; after death audit data were collected each month and analysed. During the sustainability project, 132 residents died. In comparison with the initial intervention, there were increases in (a) the proportion of deceased residents with an anticipatory care plan in place (b) the proportion of those with Do Not Attempt Cardiopulmonary Resuscitation documentation in place and (c) the proportion of those who were on the Liverpool Care Pathway when they died. Furthermore, there was a reduction in inappropriate hospital deaths of frail and elderly residents with dementia. However, overall hospital deaths increased. A lower level of nursing support managed to sustain and build on the initial outcomes. However, despite increased adoption of key end-of-life care tools, hospital deaths were higher during the sustainability project. While good support from palliative care nurse specialists and GPs can help ensure that key processes remain in place, stable management and key champions are vital to ensure that a palliative care approach becomes embedded within the culture of the care home.

  19. Nursing students' attitudes towards sustainability and health care.

    Science.gov (United States)

    Richardson, Janet; Grose, Jane; O'Connor, Anita; Bradbury, Martyn; Kelsey, Janet; Doman, Maggie

    2015-06-17

    Aim To evaluate attitudes towards embedding sustainability and climate change in nursing curricula among nursing students, some of whom had participated in a sustainability and health skills session, and determine whether the session could improve knowledge of sustainability. Methods Three months after the sustainability session, students who had participated along with a sample of students who had not, completed a Sustainability Attitudes in Nursing Survey questionnaire. This investigated attitudes towards climate change and sustainability in nursing curricula and the costs of clinical and domestic waste disposal. Results Nursing students were positive about sustainability and climate change and its inclusion in the curriculum, irrespective of their participation in the sustainability scenario session. Participants in the sustainability session were more likely to identify correctly the cost of clinical waste disposal in the NHS. Conclusion The sustainability and health skills session has the potential to improve nursing students' knowledge of the cost of clinical waste disposal.

  20. Parental uncertainty in illness: managing uncertainty surrounding an "orphan" illness.

    Science.gov (United States)

    Kerr, Anna M; Haas, Stephen M

    2014-01-01

    Parents of children with complex chronic illnesses experience substantial uncertainty that is heightened when the condition is an "orphan" illness not belonging to one medical specialty. The current study explores uncertainty experienced by parents of children with "orphan" illnesses requiring multidisciplinary care. Participant-observations over 13 months (n=200) were combined with questionnaire data (n=55) to assess parental uncertainty at a multidisciplinary pediatric clinic. Five unique types of uncertainty emerged from a grounded analysis (Glaser & Strauss, 1967), revealing 11 interrelated uncertainties these parents experience. Findings can help providers understand parents' uncertainty and assist in family-centered decision-making. Copyright © 2014 Elsevier Inc. All rights reserved.

  1. Unintended effects of orphan product designation for rare neurological diseases.

    Science.gov (United States)

    Murphy, Sinéad M; Puwanant, Araya; Griggs, Robert C

    2012-10-01

    Since the introduction of the Orphan Drug Act in 1983, designed to promote development of treatments for rare diseases, at least 378 orphan drugs have been approved. Incentives include financial support, tax credits, and perhaps most importantly, extended market exclusivity. These incentives have encouraged industry interest and accelerated research on rare diseases, allowing patients with orphan diseases access to treatments. However, extended market exclusivity has been associated with unacceptably high drug costs, both for newly developed drugs and for drugs that were previously widely available. We suggest that a paradoxical effect of orphan product exclusivity can be reduced patient access to existing drugs. In addition, the costs of each new drug are arguably unsustainable for patients and for the American health care system. Of all the specialties, neurology has the third highest number of orphan product designations, and neurological diseases account for at least one-fifth of rare diseases. Citing the use of tetrabenazine for chorea in Huntington disease, adrenocorticotropic hormone for infantile spasms, and enzyme replacement therapy with alglucosidase alpha for Pompe disease, we highlight these paradoxical effects. Copyright © 2012 American Neurological Association.

  2. Motives for Taking Orphan Children into a Foster (Guardian) Family

    Science.gov (United States)

    Kozlova, T. Z.

    2013-01-01

    Research in Russia on the opinions of guardians and experts of the department of guardianship examines the motives that people have for taking orphan children into their homes. The data indicate that about 80 percent of the guardians are grandmothers taking care of their grandchildren, whose parents have been stripped of their parental rights.…

  3. Challenges and coping strategies of orphaned children in Tanzania ...

    African Journals Online (AJOL)

    This article explores the challenges and coping strategies accompanying two possible life trajectories for orphaned children without adequate adult care: 1) that they remain in rural areas in child-headed households, or 2) that they are trafficked to an urban area. Antonovsky's salutogenic model is used as the theoretical ...

  4. Factors that enhance intrapersonal wellness of orphans and other ...

    African Journals Online (AJOL)

    The study noted that enhancement of intrapersonal wellness of orphans and other vulnerable children is crucial because this affects the children's feelings of being accepted, loved, cared for. In addition, intrapersonal wellness also affects levels of confidence, happiness, and the child's full development. The paper ...

  5. The Social and Pedagogical Protection of Orphans in Russia

    Science.gov (United States)

    Pantiukhina, E. N.

    2009-01-01

    This article discusses the history of the provision of children's care ("prizrenie") in Russia which provides evidence that the desire to help those close to one, especially orphans and the poor, was a traditional trait of the Russian national character. The system of children's welfare as it took shape over many centuries is unique in…

  6. What Can Big Data Offer the Pharmacovigilance of Orphan Drugs?

    Science.gov (United States)

    Price, John

    2016-12-01

    The pharmacovigilance of drugs for orphan diseases presents problems related to the small patient population. Obtaining high-quality information on individual reports of suspected adverse reactions is of particular importance for the pharmacovigilance of orphan drugs. The possibility of mining "big data" to detect suspected adverse reactions is being explored in pharmacovigilance generally but may have limited application to orphan drugs. Sources of big data such as social media may be infrequently used as communication channels by patients with rare disease or their caregivers or by health care providers; any adverse reactions identified are likely to reflect what is already known about the safety of the drug from the network of support that grows up around these patients. Opportunities related to potential future big data sources are discussed. Copyright © 2016 Elsevier HS Journals, Inc. All rights reserved.

  7. In place of fear: aligning health care planning with system objectives to achieve financial sustainability.

    Science.gov (United States)

    Birch, Stephen; Murphy, Gail Tomblin; MacKenzie, Adrian; Cumming, Jackie

    2015-04-01

    The financial sustainability of publicly funded health care systems is a challenge to policymakers in many countries as health care absorbs an ever increasing share of both national wealth and government spending. New technology, aging populations and increasing public expectations of the health care system are often cited as reasons why health care systems need ever increasing funding as well as reasons why universal and comprehensive public systems are unsustainable. However, increases in health care spending are not usually linked to corresponding increases in need for care within populations. Attempts to promote financial sustainability of systems such as limiting the range of services is covered or the groups of population covered may compromise their political sustainability as some groups are left to seek private cover for some or all services. In this paper, an alternative view of financial sustainability is presented which identifies the failure of planning and management of health care to reflect needs for care in populations and to integrate planning and management functions for health care expenditure, health care services and the health care workforce. We present a Health Care Sustainability Framework based on disaggregating the health care expenditure into separate planning components. Unlike other approaches to planning health care expenditure, this framework explicitly incorporates population health needs as a determinant of health care requirements, and provides a diagnostic tool for understanding the sources of expenditure increase. © The Author(s) 2014 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav.

  8. Sustaining salmonid populations: A caring understanding of naturalness of taxa

    Science.gov (United States)

    Nielsen, Jennifer L.; Regier, Henry A.; Knudsen, E. Eric

    2004-01-01

    Species of the family of Salmonidae occur naturally in Northern Hemisphere waters that remain clear and cool to cold in summer. For purposes of reproduction, salmonids generally behaviorally respond to the currents of streams and lakes in recently glaciated areas. For feeding and maturation, many larger species migrate into existing systems of large lakes, seas, and oceans. The subfamilies include Salmoninae, Coregoninae, and Thymallinae. In many locales and regions of the hemisphere, numerous species of these subfamilies evolved and self-organized into species flocks or taxocenes of bewildering complexity. For example, any individual species may play different or unique ecological roles in different taxocenes. The northern Pacific and Atlantic Ocean ecosystems, with their seas and tributaries, each contained a metacomplex of such taxocenes that, in their natural state some centuries ago, resembled each other but differed in many ways. Humans have valued all species of this family for subsistence, ceremonial, naturalist, gustatory, angling, and commercial reasons for centuries. Modern progressive humans (MPHs), whose industrial and commercial enterprises have gradually spread over this hemisphere in recent time, now affect aquatic ecosystems at all scales from local to global. These human effects mingle in complex ways that together induce uniquely natural salmonid taxocenes to disintegrate with the loss of species, including those groups least tolerant to human manipulations, but extending more recently to those taxa more adapted to anthropogenic change. As we leave the modern era, dominated by MPHs, will we find ways to live sustainably with salmonid taxocenes that still exhibit self-organizational integrity, or will only individual, isolated populations of salmonid species, derived from those most tolerant of MPHs, survive? To achieve future sustainability of salmonids, we suggest implementation of a search for intuitive knowledge based on faith in the wisdom of

  9. Oral and Dental Health Status in Orphan Children of Lucknow

    Directory of Open Access Journals (Sweden)

    Arpita Mohan

    2014-06-01

    Full Text Available Background: Orphans lack parental support and receive little oral health care. Therefore there is a propensity to develop a variety of oral lesions. Sometimes these lesions are exclusive to oral cavity or may present as an initial manifestation of a more complex underlying problem. Objective: This study hereby aims to compare the oral and dental health status of children living in orphanages and children living with their families. Materials & Methods: A cross sectional study was conducted in Lucknow city among children of age group 5-14 years living in orphanages and school children living with their parents of Lucknow city. A total of 80 orphan children and 80 school children of age group 5-14 years were taken for the study. To obtain the requisite number of school children, three schools of the similar socio economic strata as of orphanages were selected randomly from nearby area of orphanages. Results: About 21.8 percent school children were without any clinical finding whereas only 2.5 percent orphan children had no clinical finding. The hard tissue lesions were found in 83.7 percent while these were in 57.2 percent school children. The soft tissue lesions were found in 70.0 percent orphan children while these were in 31.2 percent school children. Conclusions: Majority of orphan children were suffering from oral and dental problem. Most common hard tissue finding was dental caries and soft tissue finding were Aphthous and Coated tongue in orphanages. Overall oral and dental health of orphan children were poorer than school children.

  10. Radiation Safety and Orphan Sources

    Energy Technology Data Exchange (ETDEWEB)

    Janzekovic, H.; Krizman, M. [Slovenian Nuclear Safety Administration, Ljubljana (Slovenia)

    2006-07-01

    The wide spread use of radioactive and particularly of nuclear materials which started in the last century very quickly also demonstrated negative sides. The external exposure and radiotoxicity of these materials could be easily used in a malevolent act. Due to the fact that these materials could not be detected without special equipment designed for that purpose, severe control over their use in all phases of a life cycle is required. An orphan source is a radioactive source which is not under regulatory control, either because it has never been under regulatory or because it has been abandoned, lost, misplaced, stolen or transferred without proper authorization. In the last ten years a few international conferences were dedicated to the improvement of the safety and security of radioactive sources. Three main tasks are focused, the maintenance of data bases related to events with orphan sources and the publications of such events, the preparation of recommendations and guidelines to national regulatory bodies in order to prevent and detect the events related to orphan sources as well as to develop the response strategies to radiological or nuclear emergency, appraisals of the national strategies of radioactive sources control. Concerning Slovenia, strengthening control over orphan sources in Slovenia started after the adoption of new legislation in 2002. It was carried out through several tasks with the aim to prevent orphan sources, as well as to identify the sources which could be potentially orphan sources. The comprehensive methodology was developed by the Slovenian nuclear safety administration (S.N.S.A.) based on international guidelines as well as on the study of national lesson learned cases. The methodology was developed and used in close cooperation with all parties involved, namely other regulatory authorities, police, customs, agency for radioactive waste management (A.R.A.O.), technical support organisations (T.S.O.), users of source, authorised

  11. Why Sustainers Should Care About the Targeting Process

    Science.gov (United States)

    2016-02-29

    Combined Logistics Captains Career Course and is currently attending Intermediate Level Education. Figure 1. This table is an example of a targeting...Fort Polk, Louisi- ana, where two trends emerged: most sustainers did not understand how to participate in the targeting process, and sustainers do...not always clearly understand their relevance to target- ing working groups. Both trends oc- curred because sustainers do not know how the targeting

  12. The oral hygiene status of institution dwelling orphans in Benin City ...

    African Journals Online (AJOL)

    2012-03-02

    Mar 2, 2012 ... Introduction: Orphans like other vulnerable children face a number of challenges including limited or no access to basic health care including oral health care, which is one of their unmet health care needs. Neglected oral health care is associated with the development and progression of periodontal ...

  13. The oral hygiene status of institution dwelling orphans in Benin City ...

    African Journals Online (AJOL)

    Introduction: Orphans like other vulnerable children face a number of challenges including limited or no access to basic health care including oral health care, which is one of their unmet health care needs. Neglected oral health care is associated with the development and progression of periodontal diseases among others.

  14. Psychological health of orphan bonobos and chimpanzees in African sanctuaries.

    Directory of Open Access Journals (Sweden)

    Victoria Wobber

    Full Text Available BACKGROUND: Facilities across Africa care for apes orphaned by the trade for "bushmeat." These facilities, called sanctuaries, provide housing for apes such as bonobos (Pan paniscus and chimpanzees (Pan troglodytes who have been illegally taken from the wild and sold as pets. Although these circumstances are undoubtedly stressful for the apes, most individuals arrive at the sanctuaries as infants and are subsequently provided with rich physical and social environments that can facilitate the expression of species-typical behaviors. METHODS AND FINDINGS: We tested whether bonobo and chimpanzee orphans living in sanctuaries show any behavioral, physiological, or cognitive abnormalities relative to other individuals in captivity as a result of the early-life stress they experience. Orphans showed lower levels of aberrant behaviors, similar levels of average cortisol, and highly similar performances on a broad battery of cognitive tests in comparisons with individuals of the same species who were either living at a zoo or were reared by their mothers at the sanctuaries. CONCLUSION: Taken together, these results support the rehabilitation strategy used by sanctuaries in the Pan-African Sanctuary Alliance (PASA and suggest that the orphans we examined did not show long-term signs of stress as a result of their capture. Our findings also show that sanctuary apes are as psychologically healthy as apes in other captive settings and thus represent a valuable resource for non-invasive research.

  15. A qualitative study examining the sustainability of shared care in the delivery of palliative care services in the community.

    Science.gov (United States)

    Demiglio, Lily; Williams, Allison M

    2013-08-29

    This paper focuses on the sustainability of existing palliative care teams that provide home-based care in a shared care model. For the purposes of this study, following Evashwick and Ory (2003), sustainability is understood and approached as the ability to continue the program over time. Understanding factors that influence the sustainability of teams and ways to mitigate these factors is paramount to improving the longevity and quality of service delivery models of this kind. Using qualitative data collected in interviews, the aim of this study is twofold: (1) to explore the factors that affect the sustainability of the teams at three different scales, and; (2) based on the results of this study, to propose a set of recommendations that will contribute to the sustainability of PC teams. Sustainability was conceptualized from two angles: internal and external. An overview of external sustainability was provided and the merging of data from all participant groups showed that the sustainability of teams was largely dependent on actors and organizations at the local (community), regional (Local Health Integration Network or LHIN) and provincial scales. The three scales are not self-contained or singular entities but rather are connected. Integration and collaboration within and between scales is necessary, as community capacity will inevitably reach its threshold without support of the province, which provides funding to the LHIN. While the community continues to advocate for the teams, in the long-term, they will need additional supports from the LHIN and province. The province has the authority and capacity to engrain its support for teams through a formal strategy. The recommendations are presented based on scale to better illustrate how actors and organizations could move forward. This study may inform program and policy specific to strategic ways to improve the provision of team-based palliative home care using a shared care model, while simultaneously providing

  16. Difference in Psychosocial Well-being Between Paternal and Maternal AIDS Orphans in Rural China

    OpenAIRE

    Zhao, Qun; Li, Xiaoming; Fang, Xiaoyi; Zhao, Guoxiang; Zhao, Junfeng; Lin, Xiuyun; Stanton, Bonita

    2010-01-01

    This study compares psychosocial well-being between paternal and maternal orphans in rural China in a sample (N = 459) of children who had lost one parent to HIV and who were in family-based care. Measures included academic marks, education expectation, trusting relationships with current caregivers, self-reported health status, depression, loneliness, posttraumatic stress, and social support. No significant differences were found between maternal and paternal orphans, except that paternal or...

  17. Orphans as agents for change

    Directory of Open Access Journals (Sweden)

    Gjotterud Sigrid Mari

    2015-12-01

    Full Text Available Transformative experiences can happen at unexpected times, in unexpected ways. This paper tells the story of how a gift of a goat can lead to the transformation of a life. Many organisations globally are engaged in a struggle to overcome poverty and injustice by providing livestock as a means for transformation. The animals in themselves are not enough for the transformed lives; they can be a valuable starting point. In the Uluguru Mountains in Tanzania, a Tanzanian and a Norwegian together took one such initiative in order to support teen-age orphans, one of the most vulnerable groups in the community who were struggling to survive. As practitioners and researchers, the four authors had been taking part in the development of the Mgeta Orphan Education Foundation (MOEF, which had developed through action learning/action research. Selected students received a goat and training, and the opportunity to join and develop a network of orphans throughout the region. In this article, we discuss the benefits and challenges the orphaned youngsters face when joining the foundation. How do they benefit from having the goat and what are the challenges, how do they learn and how do they contribute to fellow farmers in their communities? We claim that many of the students have experienced transformation, and provide examples to give evidence of this claim. However, the students are not the only ones who are transforming; so are we who, as co-researchers, have had the opportunity to play a role in and witness their efforts.

  18. Gravitational Waves from Orphan Memory

    OpenAIRE

    McNeill, Lucy O.; Thrane, Eric; Lasky, Paul D.

    2017-01-01

    Gravitational-wave memory manifests as a permanent distortion of an idealized gravitational-wave detector and arises generically from energetic astrophysical events. For example, binary black hole mergers are expected to emit memory bursts a little more than an order of magnitude smaller in strain than the oscillatory parent waves. We introduce the concept of "orphan memory": gravitational-wave memory for which there is no detectable parent signal. In particular, high-frequency gravitational-...

  19. Elder Orphans Hiding in Plain Sight: A Growing Vulnerable Population

    Directory of Open Access Journals (Sweden)

    Maria T. Carney

    2016-01-01

    Full Text Available Adults are increasingly aging alone with multiple chronic diseases and are geographically distant from family or friends. It is challenging for clinicians to identify these individuals, often struggling with managing the growing difficulties and the complexities involved in delivering care to this population. Clinicians often may not recognize or know how to address the needs that these patients have in managing their own health. While many such patients function well at baseline, the slightest insult can initiate a cascade of avoidable negative events. We have resurrected the term elder orphan to describe individuals living alone with little to no support system. Using public data sets, including the US Census and University of Michigan’s Health and Retirement Study, we estimated the prevalence of adults 65 years and older to be around 22%. Thus, in this paper, we strive to describe and quantify this growing vulnerable population and offer practical approaches to identify and develop care plans that are consistent with each person’s goals of care. The complex medical and psychosocial issues for elder orphans significantly impact the individual person, communities, and health-care expenditures. We hope to encourage professionals across disciplines to work cooperatively to screen elders and implement policies to prevent elder orphans from hiding in plain sight.

  20. Saving orphan drug legislations: misconceptions and clarifications.

    Science.gov (United States)

    Hyry, Hanna I; Cox, Timothy M; Roos, Jonathan C P

    2016-01-01

    Orphan-drug sales are rocketing, with revenue expected to total $176 billion annually by 2020. As a share of the industry, orphan drugs now account for close to 15% of all prescription revenue globally (excluding generics) and the sector is set to grow at more than twice the rate (10.5%) of the overall prescription market (4.3%). But this success also equates to costs--borne by individual patients and cash-strapped health systems. Prices for orphan drugs can be 19 times higher than for other medications, hampering access for patients, many of whom are children. With ever more such expensive drugs reaching the market, the situation is becoming unsustainable and putting the survival of the orphan drug legislation itself at risk. Here the authors consider why there has been an increase in orphan drug designations, how orphan drug prices are set and regulated, before discussing proposals for how changes which could save the legislation.

  1. Orphan drug product regulation--United States.

    Science.gov (United States)

    Haffner, M E

    2002-02-01

    The legislative history of the United States Orphan Drug Act began with rare, unanimous approval by the United States Congress. The Act, mid consequently the Regulations, have evolved since then. The two-stage process of Orphan Drug designation and approval is outlined, as well as the incentives that are offered to commercial companies for their implementation. Orphan Drugs are likely to be over-represented among drugs used under "Treatment" INDs. For patent- and "drug-difference" reasons, the benefits under the Orphan Drug Act are especially valuable to those who develop biologics. By any measure, this legislation, which requires only voluntary participation, has been a success; because the human genome is likely to lead to more biologicals than orthodox drugs, this success is likely to continue into the future. But even so, the 18-year experience with Orphan Drugs in the United States has led to some 225 Orphan Product approvals that benefit many millions of patients.

  2. The impact of the Orphan Drug Act on drug discovery.

    Science.gov (United States)

    Haffner, Marlene E; Maher, Paul D

    2006-11-01

    For nearly a quarter of a century the FDA Office of Orphan Products Development has administered the US Orphan Drug Act, which assists in bringing a wide variety of drug and biological (drug) products to treat rare diseases to market. Enthusiasm for rare disease product development has been sustained, seen throughout a wide spectrum of product types and disease conditions, and has resulted in clinically meaningful medical advances. Development of programmes for rare disease treatment worldwide, coupled with the development of drugs for diseases affecting developing countries, attests to the strength of this legislation. The marketing of almost 300 products in the US for rare diseases also testifies to the depth and intensity of scientific endeavour in this area.

  3. Predictors of Saudi nursing students' attitudes towards environment and sustainability in health care.

    Science.gov (United States)

    Cruz, J P; Alshammari, F; Felicilda-Reynaldo, R F D

    2018-02-09

    This study aimed to investigate the predictors of Saudi nursing students' attitudes towards the environment and sustainability in health care. With rising temperature and decreasing annual rainfall, Saudi Arabia is threatened by the harmful effects of climate change on its population. In response to these threats, the Ministry of Health adapted sustainable development and environmental preservation in their National E-Health strategy. To implement these policies successfully, healthcare practitioners should be educated on how climate change could impact human health negatively. A secondary analysis of 280 questionnaires from baccalaureate nursing students of a university in Hail City, Saudi Arabia, was completed. The New Ecological Paradigm (NEP) Scale and Sustainability Attitudes in Nursing Survey 2 (SANS-2) were used to investigate the predictors of student attitudes towards the environment and sustainable development in health care. The NEP score indicated moderate pro-environment attitudes, whereas the SANS-2 mean score showed very positive attitudes towards sustainability in health care. Learning about the environment and related issues in the nursing programme, raising climate change awareness and attending environment-related seminars and training positively influenced the environmental and sustainability attitudes of nursing students. Saudi nursing students moderately manifested pro-environment attitudes but exhibited extremely positive attitudes towards sustainability in health care. The results support the need to strengthen the education of nursing students about environmental and sustainability concepts and the inclusion of these topics in the nursing curricula. The study underscores the critical role of enriching the awareness of nursing students on environmental issues and concerns and sustainability in health care. The findings of this study can support the inclusion of course contents, which deal specifically with environmental health and

  4. Exploration of Withdrawal of Life-Sustaining Therapy in Canadian Intensive Care Units.

    Science.gov (United States)

    van Beinum, Amanda; Hornby, Laura; Ramsay, Tim; Ward, Roxanne; Shemie, Sam D; Dhanani, Sonny

    2016-05-01

    The process of controlled donation after circulatory death (cDCD) is strongly connected with the process of withdrawal of life-sustaining therapy. In addition to impacting cDCD success, actions comprising withdrawal of life-sustaining therapy have implications for quality of palliative care. We examined pilot study data from Canadian intensive care units to explore current practices of life-sustaining therapy withdrawal in nondonor patients and described variability in standard practice. Secondary analysis of observational data collected for Determination of Death Practices in Intensive Care pilot study. Four Canadian adult intensive care units. Patients ≥18 years in whom a decision to withdraw life-sustaining therapy was made and substitute decision makers consented to study participation. Organ donors were excluded. None. Prospective observational data on interventions withdrawn, drugs administered, and timing of life-sustaining therapy withdrawal was available for 36 patients who participated in the pilot study. Of the patients, 42% died in ≤1 hour; median length of time to death varied between intensive care units (39-390 minutes). Withdrawal of life-sustaining therapy processes appeared to follow a general pattern of vasoactive drug withdrawal followed by withdrawal of mechanical ventilation and extubation in most sites but specific steps varied. Approaches to extubation and weaning of vasoactive drugs were not consistent. Protocols detailing the process of life-sustaining therapy withdrawal were available for 3 of 4 sites and also exhibited differences across sites. Standard practice of life-sustaining therapy withdrawal appears to differ between selected Canadian sites. Variability in withdrawal of life-sustaining therapy may have a potential impact both on rates of cDCD success and quality of palliative care. © The Author(s) 2015.

  5. FOSTER FAMILY AS A FORM OF UNITS FOR ORPHANS AND CHILDREN WITHOUT PARENTAL CARE (CASE STUDY OF SARATOV AND BELGOROD REGIONS

    Directory of Open Access Journals (Sweden)

    Oksana Vladimirovna Besschetnova

    2013-09-01

    Full Text Available This paper discusses the development and functioning of foster families, one of the priority interventions for children without parental care in Russia and abroad. The paper analyzes the current official statistics on the problem of child abandonment in Russia as a whole and in the Saratov and Belgorod regions of Russia in particular. The mechanism of social adaptation of children in foster care is based on the qualitative and quantitative methods (surveys and interviews of foster parents and foster children. The author identifies obstacles to the development of social institutions in the regions and the necessity of its active implementation in domestic social practices. The study found that foster care has been successful in areas where accepted legal basis allowed the recruiting, selecting candidates for adoptive parents, and foster care maintenance are carried out by social services. In addition, in order to reduce risk factors such as the secondary abandonment of foster children it is necessarily to increase assistance from the social guardianship bodies and professionals as well as building trusting parent-child relationships that use the democratic parenting style by foster parents.DOI: http://dx.doi.org/10.12731/2218-7405-2013-8-8

  6. Caring Dairy: A Sustainable Dairy Farming Initiative in Europe

    NARCIS (Netherlands)

    Calker, van K.J.; Hooch Antink, R.H.J.; Beldman, A.C.G.; Mauser, A.

    2005-01-01

    Interest in the concept of sustainability in dairy farming has grown as a result of the continuous pressure on farm incomes, occurrence of animal diseases with a major impact on the image of dairy farming, concerns about animal welfare, and environmental problems caused by agriculture. There are,

  7. A sustainable primary care system: lessons from the Netherlands.

    NARCIS (Netherlands)

    Faber, M.J.; Burgers, J.S.; Westert, G.P.

    2012-01-01

    The Dutch primary care system has drawn international attention, because of its high performance at low cost. Primary care practices are easily accessible during office hours and collaborate in a unique out-of-hours system. After the reforms in 2006, there are no copayments for patients receiving

  8. The sustainability of systems of care for children's mental health: lessons learned.

    Science.gov (United States)

    Stroul, Beth A; Manteuffel, Brigitte A

    2007-07-01

    The federal Comprehensive Community Mental Health Services for Children and Their Families Program was initiated in 1992 to provide grants to states, communities, territories, and Indian tribes to develop systems of care to serve children and adolescents with or at risk for emotional disorders and their families. As part of the national evaluation of this program, a study was undertaken to assess the ability of funded sites to sustain their systems of care beyond the federal grant period. The study involved a web survey and telephone interviews with local and state respondents to examine the extent to which key components of systems of care were maintained during the period in which federal funds were phasing out and during the post grant period. Study results demonstrate positive and negative changes that occurred in the communities which are included in the sample, with respect to maintaining the availability of each service included in the broad service array, the implementation of system of care principles, the system of care infrastructure, and the achievement of system of care goals. In addition, results identify factors that contribute to or impede the ability to sustain systems of care, and the effectiveness of various strategies for sustainability. Study findings offer guidance not only to federally funded system of care communities but also to non-funded communities engaged in system of care development to enhance their ability to sustain systems of care for this population over time. Findings will also assist federal, state, and local policymakers, technical assistance providers, family members, advocates, and other key stakeholders to more effectively support the development of viable, sustainable systems of care.

  9. Intra-household differences in health seeking behaviour for orphans and non-orphans in an NGO-supported and non-supported sub-county of Luwero, Uganda.

    Science.gov (United States)

    Muhwezi, Wilson Winstons; Muhangi, Denis; Mugumya, Firminus

    2009-06-01

    Comparing healthcare dynamics among orphans and non-orphans in an NGO supported and a non-supported sub-county so as to identify the level of equity. This was a cross-sectional unmatched case-control research. A sample of 98 orphans and 98 non-orphans in an NGO supported sub-county and a similar number in a control sub-county participated. For each child, a corresponding caregiver participated. Each respondent was interviewed. Analysis was comparative. Relationships between variables were ascertained using a X(2). Fevers were the most common health problem. However, 14.3% of children reported an experience of diarrhoea in an NGO-supported sub-county as opposed to 85.7% in the control sub-county (p = 0.014). Twenty percent of children in the NGO supported sub-county reported skin infections compared to 80% in the control sub-county [p= 0.008]. When orphans fell sick, more caregivers in the supported sub-county consulted village clinics compared to self herbal-medication (p = 0.009). Majority of orphan caregivers compared to those for non-orphans in the control sub-county took their children to village clinics as opposed to health centres (p = 0.002). In the control sub-county, fewer caregivers responded to children's illness by buying medicines from drug-shops as opposed to taking them to village clinics [(p = 0.040). There were some differences between orphans and non-orphans within each sub-county and between orphans in the two sub-counties. NGO support is critical in cultivating equity, compassion and non-discrimination. The extended family system in Africa was managing orphan care although it displayed cracks in support systems.

  10. Prerequisites for sustainable care improvement using the reflective team as a work model.

    Science.gov (United States)

    Jonasson, Lise-Lotte; Carlsson, Gunilla; Nyström, Maria

    2014-01-01

    Several work models for care improvement have been developed in order to meet the requirement for evidence-based care. This study examines a work model for reflection, entitled the reflective team (RT). The main idea behind RTs is that caring skills exist among those who work closest to the patients. The team leader (RTL) encourages sustainable care improvement, rooted in research and proven experience, by using a lifeworld perspective to stimulate further reflection and a developmental process leading to research-based caring actions within the team. In order to maintain focus, it is important that the RTL has a clear idea of what sustainable care improvement means, and what the prerequisites are for such improvement. The aim of the present study is, therefore, to explore the prerequisites for improving sustainable care, seeking to answer how RTLs perceive these and use RTs for concrete planning. Nine RTLs were interviewed, and their statements were phenomenographically analysed. The analysis revealed three separate qualitative categories, which describe personal, interpersonal, and structural aspects of the prerequisites. In the discussion, these categories are compared with previous research on reflection, and the conclusion is reached that the optimal conditions for RTs to work, when focussed on sustainable care improvement, occur when the various aspects of the prerequisites are intertwined and become a natural part of the reflective work.

  11. Compassionate use of orphan drugs.

    Science.gov (United States)

    Hyry, Hanna I; Manuel, Jeremy; Cox, Timothy M; Roos, Jonathan C P

    2015-08-21

    EU regulation 726/2004 authorises manufacturers to provide drugs to patients on a temporary basis when marketing authorisation sought centrally for the entire EU is still pending. Individual Member States retain the right to approve and implement such 'compassionate use' programmes which companies will usually provide for free. Nevertheless some companies have opted not to partake in such programmes, in effect restricting access to drugs for patients in need. Here we survey the state of compassionate use programmes in the EU with particular reference to the rare disease field, and provide legal and ethical arguments to encourage their increased compassionate use in the EU and beyond. We contend that if enacted, these recommendations will be mutually beneficial to companies as well as patients. Requests for information from the European Medicines Agency were made under the UK Freedom of Information Act 2000. Legal, ethical and economic/pragmatic analysis identified means by which provision of therapy in compassionate use programmes might be increased. More than 50 notifications of compassionate use programmes have been submitted to the EMA by Member States since 2006. About 40 % relate to orphan drugs. As there is a compulsory register of programmes but not of outcomes, their success is difficult to evaluate but, for example, the French programme expedited treatment for more than 20,000 (orphan and non-orphan) patients over a period of three years. Compelling self-interested, legal and ethical arguments can be mounted to encourage manufacturers to offer therapies on a compassionate use basis and these are often equally applicable to provision on a humanitarian aid basis. The EU's compassionate use programmes are instrumental in ensuring continuity of access to drugs until approval and reimbursement decisions are finalised. We propose the creation of a registry of drugs offered on a compassionate use basis; further transparency would allow such programmes to be

  12. The role of partnership functioning and synergy in achieving sustainability of innovative programmes in community care.

    Science.gov (United States)

    Cramm, Jane M; Phaff, Sanne; Nieboer, Anna P

    2013-03-01

    This cross-sectional study (conducted in April-May 2011) explored associations between partnership functioning synergy and sustainability of innovative programmes in community care. The study sample consisted of 106 professionals (of 244 individuals contacted) participating in 21 partnerships that implemented different innovative community care programmes in Rotterdam, The Netherlands. Partnership functioning was evaluated by assessing leadership, resources administration and efficiency. Synergy was considered the proximal outcome of partnership functioning, which, in turn, influenced the achievement of programme sustainability. On a 5-point scale of increasing sustainability, mean sustainability scores ranged from 1.9 to 4.9. The results of the regression analysis demonstrated that sustainability was positively influenced by leadership (standardised regression coefficient β = 0.32; P Partnership synergy acted as a mediator for partnership functioning and significantly affected sustainability (β = 0.39; P community care is achieved more readily when synergy is created between partners. Synergy was more likely to emerge with boundary-spanning leaders, who understood and appreciated partners' different perspectives, and could bridge their diverse cultures and were comfortable sharing ideas, resources and power. In addition, the acknowledgement of and ability to use members' resources were found to be valuable in engaging partners' involvement and achieving synergy in community care partnerships. © 2012 Blackwell Publishing Ltd.

  13. Readers Want Reforms of Orphan Drug Act.

    Science.gov (United States)

    2017-06-01

    More than half (53%) of the 111 respondents to an online survey rated orphan drugs as having a major impact on rising drug costs, although there was also fairly wide (if mild) agreement that the 1983 Orphan Drug Act has been successful in creating incentives to develop remedies for rare diseases.

  14. Orphan drugs in glioblastoma multiforme: a review

    Directory of Open Access Journals (Sweden)

    Lassen U

    2014-11-01

    Full Text Available Ulrik Lassen, Morten Mau-Sørensen, Hans Skovgaard Poulsen Department of Oncology, Rigshospitalet, Copenhagen, DenmarkAbstract: Glioblastoma multiforme (GBM is the most common and deadly brain tumor in adults. The incidence of GBM in the USA and Europe is 2–3 per 100,000. By definition, an orphan disease affects up to 200,000 persons in the USA (one in every 1,500. A search was made in the US Food and Drug Administration orphan drug listing. In addition, a PubMed search of orphan drugs designated for GBM or high-grade glioma was performed, followed by a search for clinical studies in GBM with orphan drugs designated for other indications. This included cytotoxic chemotherapy and targeted agents. Thirteen drugs with orphan designation for the treatment of glioblastoma, high-grade glioma, or primary malignant brain tumors were identified. In addition, 16 drugs with orphan designation for other indications were identified to have been evaluated in clinical studies of GBM. The efficacy data from the clinical studies is presented. A few agents have been approved by the US Food and Drug Administration for the treatment of high-grade gliomas following orphan drug designation, but most have failed to reach the market. However, a few patients may have benefited from receiving developmental agents within clinical trials. Biomarkers for selection of these patients may result in more success in the field of personalized medicine. Keywords: orphan drugs, glioblastoma multiforme, brain tumor, targeted therapy, cytotoxic therapy

  15. Orphans in mediterranean antiquity and early Christianity ...

    African Journals Online (AJOL)

    This article provides an overview of the problem of orphans in the ancient Mediterranean world and identifies ways in which various societies acknowledged orphans' plight and sought to address it. Part 1 gives the ancient definition of “orphan” as a “fatherless child” and statistical estimates for the percentage of children ...

  16. HIV Orphanhood Research and the Representation of Older Orphans in Sub-Saharan Africa: A Literature Review.

    Science.gov (United States)

    Popoola, Tosin; Mchunu, Gugu

    2016-01-01

    One impact of incurable HIV infection is the large number of orphans and vulnerable children (OVC) who are affected by HIV. The age-based criteria used to determine support eligibility for HIV orphans, however, exclude older orphans (≥18 years of age) from support. We conducted a literature survey in order to explore possible inclusion of older orphans (ages 18-24 years) in HIV orphanhood research. We found 17 studies conducted in eight countries that met the review inclusion criteria. Findings from the review revealed that older HIV orphans are underrepresented in the OVC literature. The emerging, but limited, evidence suggests that older orphans are at risk for poorer psychosocial and reproductive outcomes. We recommend increasing inclusion of older orphans in HIV orphan research because of their complex physical, reproductive, and psychosocial needs. This inclusion is necessary to allow their experiences and needs to become clearer. Copyright © 2016 Association of Nurses in AIDS Care. Published by Elsevier Inc. All rights reserved.

  17. Sustainability in primary care and Mental Health Integration projects in Veterans Health Administration.

    Science.gov (United States)

    Ford, James H; Krahn, Dean; Oliver, Karen Anderson; Kirchner, JoAnn

    2012-01-01

    To explore staff perceptions about sustainability, commitment to change, participation in change process, and information received about the change project within the Veterans Administration Primary Care and Mental Health Integration (PC-MHI) initiative and to examine differences from the Veterans Health Administration Mental Health Systems Redesign (MHSR) initiative. Surveys of change team members involved in the Veterans Affairs PC-MHI and MHSR initiatives. One-way analysis of variance examined the relationship between commitment, participation and information, and sustainability. Differences in PC-MHI sustainability were explored by location and job classification. Staff sustainability perceptions were compared with MHSR results. Sustainability differed by staff discipline. Difference between MHSR and PC-MHI existed by job function and perceptions about the change benefits. Participation in the change process and information received about the change process were positively correlated with sustainability. Staff commitment to change was positively associated with staff perceptions about the benefits of change and staff attitudes toward change. Sustainability is an important part of organizational change efforts. Change complexity seems to influence perception about sustainability and impacts staff perceptions about the benefits of change. These perceptions seem to be driven by the information received and opportunities to participate in the change process. Further research is needed to understand how information and participation influence sustainability and affect employee commitment to change.

  18. Enhancing learning, innovation, adaptation, and sustainability in health care organizations: the ELIAS performance management framework.

    Science.gov (United States)

    Persaud, D David

    2014-01-01

    The development of sustainable health care organizations that provide high-quality accessible care is a topic of intense interest. This article provides a practical performance management framework that can be utilized to develop sustainable health care organizations. It is a cyclical 5-step process that is premised on accountability, performance management, and learning practices that are the foundation for a continuous process of measurement, disconfirmation, contextualization, implementation, and routinization This results in the enhancement of learning, innovation, adaptation, and sustainability (ELIAS). Important considerations such as recognizing that health care organizations are complex adaptive systems and the presence of a dynamic learning culture are necessary contextual factors that maximize the effectiveness of the proposed framework. Importantly, the ELIAS framework utilizes data that are already being collected by health care organizations for accountability, improvement, evaluation, and strategic purposes. Therefore, the benefit of the framework, when used as outlined, would be to enhance the chances of health care organizations achieving the goals of ongoing adaptation and sustainability, by design, rather than by chance.

  19. Towards systemic sustainable performance of TBI care systems: emergency leadership frontiers.

    Science.gov (United States)

    Caro, Denis H J

    2010-11-10

    Traumatic brain injuries (TBIs) continue as a twenty-first century subterranean and almost invisible scourge internationally. TBI care systems provide a safety net for survival, recovery, and reintegration into social communities from this scourge, particularly in Canada, the European Union, and the USA. This paper examines the underlying issues of systemic performance and sustainability of TBI care systems, in the light of decreasing care resources and increasing demands for services. This paper reviews the extant literature on TBI care systems, systems reengineering, and emergency leadership literature. This paper presents a seven care layer paradigm, which forms the essence of systemic performance in the care of patients with TBIs. It also identifies five key strategic drivers that hold promise for the future systemic sustainability of TBI care systems. Transformational leadership and engagement from the international emergency medical community is the key to generating positive change. The sustainability/performance care framework is relevant and pertinent for consideration internationally and in the context of other emergency medical populations.

  20. Sustaining Care: Cultivating Mindful Practice in Early Years Professional Development

    Science.gov (United States)

    Taggart, Geoff

    2015-01-01

    The practitioner's own self is a resource in early childhood education and care (ECEC). It is proposed that an experiential training focusing on the "professional self" helps to raise awareness of how psychological dispositions may impair or enhance quality of provision. A key concept in such training is emotional labour, explored with…

  1. Sustainability of professionals’ adherence to clinical practice guidelines in medical care: a systematic review

    Science.gov (United States)

    Ament, Stephanie M C; de Groot, Jeanny J A; Maessen, José M C; Dirksen, Carmen D; van der Weijden, Trudy; Kleijnen, Jos

    2015-01-01

    Objectives To evaluate (1) the state of the art in sustainability research and (2) the outcomes of professionals’ adherence to guideline recommendations in medical practice. Design Systematic review. Data sources Searches were conducted until August 2015 in MEDLINE, CINAHL, EMBASE, Cochrane Central Register of Controlled Trials (CENTRAL) and the Guidelines International Network (GIN) library. A snowball strategy, in which reference sections of other reviews and of included papers were searched, was used to identify additional papers. Eligibility criteria Studies needed to be focused on sustainability and on professionals’ adherence to clinical practice guidelines in medical care. Studies had to include at least 2 measurements: 1 before (PRE) or immediately after implementation (EARLY POST) and 1 measurement longer than 1 year after active implementation (LATE POST). Results The search retrieved 4219 items, of which 14 studies met the inclusion criteria, involving 18 sustainability evaluations. The mean timeframe between the end of active implementation and the sustainability evaluation was 2.6 years (minimum 1.5–maximum 7.0). The studies were heterogeneous with respect to their methodology. Sustainability was considered to be successful if performance in terms of professionals’ adherence was fully maintained in the late postimplementation phase. Long-term sustainability of professionals’ adherence was reported in 7 out of 18 evaluations, adherence was not sustained in 6 evaluations, 4 evaluations showed mixed sustainability results and in 1 evaluation it was unclear whether the professional adherence was sustained. Conclusions (2) Professionals’ adherence to a clinical practice guideline in medical care decreased after more than 1 year after implementation in about half of the cases. (1) Owing to the limited number of studies, the absence of a uniform definition, the high risk of bias, and the mixed results of studies, no firm conclusion about the

  2. Sustainability of professionals' adherence to clinical practice guidelines in medical care: a systematic review.

    Science.gov (United States)

    Ament, Stephanie M C; de Groot, Jeanny J A; Maessen, José M C; Dirksen, Carmen D; van der Weijden, Trudy; Kleijnen, Jos

    2015-12-29

    To evaluate (1) the state of the art in sustainability research and (2) the outcomes of professionals' adherence to guideline recommendations in medical practice. Systematic review. Searches were conducted until August 2015 in MEDLINE, CINAHL, EMBASE, Cochrane Central Register of Controlled Trials (CENTRAL) and the Guidelines International Network (GIN) library. A snowball strategy, in which reference sections of other reviews and of included papers were searched, was used to identify additional papers. Studies needed to be focused on sustainability and on professionals' adherence to clinical practice guidelines in medical care. Studies had to include at least 2 measurements: 1 before (PRE) or immediately after implementation (EARLY POST) and 1 measurement longer than 1 year after active implementation (LATE POST). The search retrieved 4219 items, of which 14 studies met the inclusion criteria, involving 18 sustainability evaluations. The mean timeframe between the end of active implementation and the sustainability evaluation was 2.6 years (minimum 1.5-maximum 7.0). The studies were heterogeneous with respect to their methodology. Sustainability was considered to be successful if performance in terms of professionals' adherence was fully maintained in the late postimplementation phase. Long-term sustainability of professionals' adherence was reported in 7 out of 18 evaluations, adherence was not sustained in 6 evaluations, 4 evaluations showed mixed sustainability results and in 1 evaluation it was unclear whether the professional adherence was sustained. (2) Professionals' adherence to a clinical practice guideline in medical care decreased after more than 1 year after implementation in about half of the cases. (1) Owing to the limited number of studies, the absence of a uniform definition, the high risk of bias, and the mixed results of studies, no firm conclusion about the sustainability of professionals' adherence to guidelines in medical practice can be drawn

  3. Health Care Infrastructure for Financially Sustainable Clinical Genomics.

    Science.gov (United States)

    Lennerz, Jochen K; McLaughlin, Heather M; Baron, Jason M; Rasmussen, David; Sumbada Shin, Meini; Berners-Lee, Nancy; Miller Batten, Julie; Swoboda, Kathryn J; Gala, Manish K; Winter, Harland S; Schmahmann, Jeremy D; Sweetser, David A; Boswell, Marianne; Pacula, Maciej; Stenzinger, Albrecht; Le, Long P; Hynes, William; Rehm, Heidi L; Klibanski, Anne; Black-Schaffer, Stephen W; Golden, Jeffrey A; Louis, David N; Weiss, Scott T; Iafrate, A John

    2016-09-01

    Next-generation sequencing has evolved technically and economically into the method of choice for interrogating the genome in cancer and inherited disorders. The introduction of procedural code sets for whole-exome and genome sequencing is a milestone toward financially sustainable clinical implementation; however, achieving reimbursement is currently a major challenge. As part of a prospective quality-improvement initiative to implement the new code sets, we adopted Agile, a development methodology originally devised in software development. We implemented eight functionally distinct modules (request review, cost estimation, preauthorization, accessioning, prebilling, testing, reporting, and reimbursement consultation) and obtained feedback via an anonymous survey. We managed 50 clinical requests (January to June 2015). The fraction of pursued-to-requested cases (n = 15/50; utilization management fraction, 0.3) aimed for a high rate of preauthorizations. In 13 of 15 patients the insurance plan required preauthorization, which we obtained in 70% and ultimately achieved reimbursement in 50%. Interoperability enabled assessment of 12 different combinations of modules that underline the importance of an adaptive workflow and policy tailoring to achieve higher yields of reimbursement. The survey confirmed a positive attitude toward self-organizing teams. We acknowledge the individuals and their interactions and termed the infrastructure: human pipeline. Nontechnical barriers currently are limiting the scope and availability of clinical genomic sequencing. The presented human pipeline is one approach toward long-term financial sustainability of clinical genomics. Copyright © 2016 American Society for Investigative Pathology and the Association for Molecular Pathology. Published by Elsevier Inc. All rights reserved.

  4. Impact of Nutritional Status on Cognition in Institutionalized Orphans: A Pilot Study.

    Science.gov (United States)

    Kamath, Sanjana M; Venkatappa, Kavana G; Sparshadeep, Ergod Manjunath

    2017-03-01

    Proper nutrition is critical for maximizing brain function and enhancing learning. There is accumulating evidence that early malnutrition, marked by stunting, is associated with long-term deficits in cognitive and academic performance, even when social and psychological differences are controlled. All over the world, children living without permanent parental care are at a heightened risk for under-nutrition, putting their health and development in great jeopardy. To assess the nutritional and cognitive status in institutionalized orphans which might help to formulate effective interventions for improving the nutritional status of vulnerable children in future. This cross-sectional, study included 70 children (35 orphans and 35 non-orphans). Their anthropometric measurements (height, weight, and BMI) were measured and cognition was assessed using subsets of Wechsler Intelligence Scale for Children-Revised (WISC-R): Block design and Digit span. The data obtained was subjected to descriptive statistical analysis. 18.57% (13) of children had stunting, 15.71% (11) had wasting, 22.86% (16) were underweight, and 17.14% (12) showed thinness. Mean±SD of Block design in non-orphans was significantly higher compared to orphans (p-value 0·05). Mean±SD of Digit span in non-orphans was significantly higher compared to orphans (p-value 0·000). For Block design, there was moderate positive correlation with nutritional status based on Z-scores (p-value <0·05). Digit span also showed moderate positive correlation (p-value <0·05). The results of our study indicate that children in orphanages have high rates of both malnutrition and cognitive delay compared to the non-orphans and there was a direct correlation between both the variables. If orphanages are here to stay as a last resort for children deprived of a family there is an urgent need to improve the institutional environment in order to foster the development of millions of children in orphanages around the world.

  5. 21 CFR 316.36 - Insufficient quantities of orphan drugs.

    Science.gov (United States)

    2010-04-01

    ... (CONTINUED) DRUGS FOR HUMAN USE ORPHAN DRUGS Orphan-drug Exclusive Approval § 316.36 Insufficient quantities of orphan drugs. (a) Under section 527 of the act, whenever the Director has reason to believe that... 21 Food and Drugs 5 2010-04-01 2010-04-01 false Insufficient quantities of orphan drugs. 316.36...

  6. Critical care nurses' attitude towards life-sustaining treatments in South East Iran.

    Science.gov (United States)

    Razban, Farideh; Iranmanesh, Sedigheh; Aliabadi, Hasan Eslami; Forouzi, Mansooreh Azzizadeh

    2016-01-01

    Life-sustaining treatments (LSTs) may prolong life but greatly decrease the quality of death. One factor influencing decision-making about withholding and withdrawing these treatments is the attitude of nurses. This study aimed to evaluate the attitude of critical care nurses towards life-sustaining treatments in South East Iran. In this cross-sectional study, "Ethnicity and Attitudes towards Advance Care Directives Questionnaire" was used to investigate the attitude of 104 critical care nurses towards life-sustaining treatments in three hospitals affiliated to Kerman University of Medical Sciences. The findings of this study indicated that although a majority of critical care nurses (77%) did not have personal desire for use of LSTs including CPR and mechanical ventilation, they had moderately negative to neutral attitude towards general use of LSTs (2.95 of 5). These findings suggest that nurses' attitude towards LSTs can be changed by inclusion of specific courses about death, palliative care and life-sustaining treatments in undergraduate and postgraduate nursing curricula. Educating Muslim nurses about religious aspects of LSTs may also improve their attitudes.

  7. Critical care nurses’ attitude towards life-sustaining treatments in South East Iran

    Science.gov (United States)

    Razban, Farideh; Iranmanesh, Sedigheh; Aliabadi, Hasan Eslami; Forouzi, Mansooreh Azzizadeh

    2016-01-01

    BACKGROUND: Life-sustaining treatments (LSTs) may prolong life but greatly decrease the quality of death. One factor influencing decision-making about withholding and withdrawing these treatments is the attitude of nurses. This study aimed to evaluate the attitude of critical care nurses towards life-sustaining treatments in South East Iran. METHODS: In this cross-sectional study, “Ethnicity and Attitudes towards Advance Care Directives Questionnaire” was used to investigate the attitude of 104 critical care nurses towards life-sustaining treatments in three hospitals affiliated to Kerman University of Medical Sciences. RESULTS: The findings of this study indicated that although a majority of critical care nurses (77%) did not have personal desire for use of LSTs including CPR and mechanical ventilation, they had moderately negative to neutral attitude towards general use of LSTs (2.95 of 5). CONCLUSIONS: These findings suggest that nurses’ attitude towards LSTs can be changed by inclusion of specific courses about death, palliative care and life-sustaining treatments in undergraduate and postgraduate nursing curricula. Educating Muslim nurses about religious aspects of LSTs may also improve their attitudes. PMID:27006741

  8. New concept of aging care architecture landscape design based on sustainable development

    Science.gov (United States)

    Xu, Ying

    2017-05-01

    As the aging problem becoming serious in China, Aging care is now one of the top issuer in front of all of us. Lots of private and public aging care architecture and facilities have been built. At present, we only pay attention to the architecture design and interior design scientific, ecological and sustainable design on aged care architecture landscape. Based on the social economy, population resources, mutual coordination and development of the environment, taking the elderly as the special group, this paper follows the principles of the sustainable development, conducts the comprehensive design planning of aged care landscape architecture and makes a deeper understanding and exploration through changing the form of architectural space, ecological landscape planting, new materials and technology, ecological energy utilization.

  9. Linking Environmental Sustainability, Health, and Safety Data in Health Care: A Research Roadmap.

    Science.gov (United States)

    Kaplan, Susan B; Forst, Linda

    2017-08-01

    Limited but growing evidence demonstrates that environmental sustainability in the health-care sector can improve worker and patient health and safety. Yet these connections are not appreciated or understood by decision makers in health-care organizations or oversight agencies. Several studies demonstrate improvements in quality of care, staff satisfaction, and work productivity related to environmental improvements in the health-care sector. A pilot study conducted by the authors found that already-collected data could be used to evaluate impacts of environmental sustainability initiatives on worker and patient health and safety, yet few hospitals do so. Future research should include a policy analysis of laws that could drive efforts to integrate these areas, elucidation of organizational models that promote sharing of environmental and health and safety data, and development of tools and methods to enable systematic linkage and evaluation of these data to expand the evidence base and improve the hospital environment.

  10. Incentives to Repurpose Existing Drugs for Orphan Indications

    OpenAIRE

    Kwok, Annette K.; Koenigbauer, Fabian M.

    2015-01-01

    The Orphan Drug Act has been successful in providing incentives to find cures for orphan diseases. However, many orphan diseases are still without cure. Therefore, the 114th Congress has introduced the 21st Century Cures Act and the Orphan Product Extension Now Accelerating Cures and Treatment Act of 2015 to further provide incentives to innovators to repurpose existing drugs for treatment of these orphan diseases. However, these bills are currently pending and their ince...

  11. Incentives to Repurpose Existing Drugs for Orphan Indications.

    Science.gov (United States)

    Kwok, Annette K; Koenigbauer, Fabian M

    2015-08-13

    The Orphan Drug Act has been successful in providing incentives to find cures for orphan diseases. However, many orphan diseases are still without cure. Therefore, the 114th Congress has introduced the 21st Century Cures Act and the Orphan Product Extension Now Accelerating Cures and Treatment Act of 2015 to further provide incentives to innovators to repurpose existing drugs for treatment of these orphan diseases. However, these bills are currently pending and their incentives might not go far enough.

  12. Do ultra-orphan medicinal products warrant ultra-high prices? A review

    Directory of Open Access Journals (Sweden)

    Picavet E

    2013-06-01

    Full Text Available Eline Picavet,1 David Cassiman,2 Steven Simoens1 1Department of Pharmaceutical and Pharmacological Sciences, KU Leuven, Leuven, Belgium; 2Department of Hepatology, University Hospital Leuven, Leuven, Belgium Abstract: Ultra-orphan medicinal products (ultra-OMPs are intended for the treatment, prevention, or diagnosis of ultra-rare diseases, ie, life-threatening or chronically debilitating diseases that affect less than one per 50,000 individuals. Recently, high prices for ultra-OMPs have given rise to debate on the sustainability and justification of these prices. The aim of this article is to review the international scientific literature on the pricing of ultra-OMPs and to provide an overview of the current knowledge on the drivers of ultra-OMP pricing. The pricing process of ultra-OMPs is a complex and nontransparent issue. Evidence in the literature seems to indicate that ultra-OMPs are priced according to rarity and what the manufacturer believes the market will bear. Additionally, there appears to be a trend between the price of an ultra-OMP and the number of available alternatives. Patients, third-party payers, and pharmaceutical companies could benefit from more transparent pricing strategies. With a view to containing health care costs, it is likely that cost-sharing strategies, such as performance-based risk sharing arrangements, will become increasingly more important. However, it is vital that any measures for price control are consistent with the intended goals of the incentives to promote the development of new OMPs. Ideally, a balance must be struck between attaining affordable prices for ultra-OMPs and securing a realistic return on investment for the pharmaceutical industry. Keywords: ultra-orphan medicinal product, ultra-rare disease, pricing

  13. Sustainable business models: systematic approach toward successful ambulatory care pharmacy practice.

    Science.gov (United States)

    Sachdev, Gloria

    2014-08-15

    This article discusses considerations for making ambulatory care pharmacist services at least cost neutral and, ideally, generate a margin that allows for service expansion. The four pillars of business sustainability are leadership, staffing, information technology, and compensation. A key facet of leadership in ambulatory care pharmacy practice is creating and expressing a clear vision for pharmacists' services. Staffing considerations include establishing training needs, maximizing efficiencies, and minimizing costs. Information technology is essential for efficiency in patient care delivery and outcomes assessment. The three domains of compensation are cost savings, pay for performance, and revenue generation. The following eight steps for designing and implementing an ambulatory care pharmacist service are discussed: (1) prepare a needs assessment, (2) analyze existing strengths, weaknesses, opportunities, and threats, (3) analyze service gaps and feasibility, (4) consider financial opportunities, (5) consider stakeholders' interests, (6) develop a business plan, (7) implement the service, and (8) measure outcomes. Potential future changes in national healthcare policy (such as pharmacist provider status and expanded pay for performance) could enhance the opportunities for sustainable ambulatory care pharmacy practice. The key challenges facing ambulatory care pharmacists are developing sustainable business models, determining which services yield a positive return on investment, and demanding payment for value-added services. Copyright © 2014 by the American Society of Health-System Pharmacists, Inc. All rights reserved.

  14. Promoting new norms and true flexibility : Sustainability in combining career and care

    NARCIS (Netherlands)

    Vinkenburg, C.J.; van Engen, Marloes; Peters, C.P.; de Vos, A.; van der Heijden, B.I.J.M.

    2015-01-01

    In light of current demographic developments and recent technological innovations common to industrialized nations, how to create and promote sustainability in combining career and care is an increasingly important social issue. In this contribution, we focus on the role of societal norms about

  15. Innovation sustainability in challenging health-care contexts: embedding clinically led change in routine practice.

    Science.gov (United States)

    Martin, Graham P; Weaver, Simon; Currie, Graeme; Finn, Rachael; McDonald, Ruth

    2012-11-01

    The need for organizational innovation as a means of improving health-care quality and containing costs is widely recognized, but while a growing body of research has improved knowledge of implementation, very little has considered the challenges involved in sustaining change - especially organizational change led 'bottom-up' by frontline clinicians. This study addresses this lacuna, taking a longitudinal, qualitative case-study approach to understanding the paths to sustainability of four organizational innovations. It highlights the importance of the interaction between organizational context, nature of the innovation and strategies deployed in achieving sustainability. It discusses how positional influence of service leads, complexity of innovation, networks of support, embedding in existing systems, and proactive responses to changing circumstances can interact to sustain change. In the absence of cast-iron evidence of effectiveness, wider notions of value may be successfully invoked to sustain innovation. Sustainability requires continuing effort through time, rather than representing a final state to be achieved. Our study offers new insights into the process of sustainability of organizational change, and elucidates the complement of strategies needed to make bottom-up change last in challenging contexts replete with competing priorities.

  16. Models of care for traumatically injured patients at trauma centres in British Columbia: variability and sustainability.

    Science.gov (United States)

    Tuyp, Benjamin; Hassani, Kasra; Constable, Lisa; Haegert, Joseph

    2017-07-11

    Successful trauma systems employ a network of variably-resourced hospitals, staffed by experienced providers, to deliver optimal care for injured patients. The "model of care"-the manner by which inpatients are admitted and overseen, is an important determinant of patient outcomes. To describe the models of inpatient trauma care at British Columbia's (BC's) ten adult trauma centres, their sustainability, and their compatibility with accreditation guidelines. Questionnaires were distributed to the trauma medical directors at BC's ten Level I-III adult trauma centres. Follow-up semi-structured interviews clarified responses. Three different models of inpatient trauma care exist within BC. The "admitting trauma service" was a multidisciplinary team providing exclusive care for injured patients. The "on-call consultant" assisted with Emergency Department (ED) resuscitation before transferring patients to a non-trauma admitting service. The single "short-stay trauma unit" employed on-call consultants who also oversaw a 48-hour short-stay ward. Both level I trauma centres utilized the admitting trauma service model (2/2). All Level II sites employed an on-call consultant model (3/3), deviating from Level II trauma centre accreditation standards. Level III sites employed all three models in similar proportions. None of the on-call consultant sites believed their current care model was sustainable. Inadequate compensation, insufficient resources, and difficulty recruiting physicians were cited barriers to sustainability and accreditation compliance. Three distinct models of care are distributed inconsistently across BC's Level I-III trauma hospitals. Greater use of admitting trauma service and short-stay trauma unit models may improve the sustainability and accreditation compliance of our trauma system.

  17. Two decades of orphan product development.

    Science.gov (United States)

    Haffner, Marlene E; Whitley, Janet; Moses, Marie

    2002-10-01

    Over the past 20 years, incentives of the Orphan Drug Act (ODA), the largest single source of extramural clinical grants at the US Food and Drug Administration, have had a substantial impact on public health. ODA incentives have contributed to the development of many innovative biotechnology products, and as our understanding of the human genome evolves, it is anticipated that pharmacogenomics will result in the identification of more 'orphan diseases'.

  18. Spreading and sustaining best practices for home care of older adults: a grounded theory study.

    Science.gov (United States)

    Ploeg, Jenny; Markle-Reid, Maureen; Davies, Barbara; Higuchi, Kathryn; Gifford, Wendy; Bajnok, Irmajean; McConnell, Heather; Plenderleith, Jennifer; Foster, Sandra; Bookey-Bassett, Sue

    2014-11-07

    Improving health care quality requires effective and timely spread of innovations that support evidence-based practices. However, there is limited rigorous research on the process of spread, factors influencing spread, and models of spread. It is particularly important to study spread within the home care sector given the aging of the population, expansion of home care services internationally, the high proportion of older adult users of home care services, and the vulnerability of this group who are frail and live with multiple chronic conditions. The purpose of this study was to understand how best practices related to older adults are spread within home care organizations. Four home care organizations in Ontario, Canada that had implemented best practices related to older adults (falls prevention, pain management, management of venous leg ulcers) participated. Using a qualitative grounded theory design, interviews were conducted with frontline providers, managers, and directors at baseline (n = 44) and 1 year later (n = 40). Open, axial, and selective coding and constant comparison analysis were used. A model of the process of spread of best practices within home care organizations was developed. The phases of spread included (1) committing to change, (2) implementing on a small scale, (3) adapting locally, (4) spreading internally to multiple users and sites, and (5) disseminating externally. Factors that facilitated progression through these phases were (1) leading with passion and commitment, (2) sustaining strategies, and (3) seeing the benefits. Project leads, champions, managers, and steering committees played vital roles in leading the spread process. Strategies such as educating/coaching and evaluating and feedback were key to sustaining the change. Spread occurred within the home care context of high staff and manager turnover and time and resource constraints. Spread of best practices is optimized through the application of the phases of spread

  19. Exploring implementation and sustainability of models of care: can theory help?

    Directory of Open Access Journals (Sweden)

    Forster Della A

    2011-11-01

    Full Text Available Abstract Objective Research on new models of care in health service provision is complex, as is the introduction and embedding of such models, and positive research findings are only one factor in whether a new model of care will be implemented. In order to understand why this is the case, research design must not only take account of proposed changes in the clinical encounter, but the organisational context that must sustain and normalise any changed practices. We use two case studies where new models of maternity care were implemented and evaluated via randomised controlled trials (RCTs to discuss how (or whether the use of theory might inform implementation and sustainability strategies. The Normalisation Process Model is proposed as a suitable theoretical framework, and a comparison made using the two case studies – one where a theoretical framework was used, the other where it was not. Context and approach In the maternity sector there is considerable debate about which model of care provides the best outcomes for women, while being sustainable in the organisational setting. We explore why a model of maternity care – team midwifery (where women have a small group of midwives providing their care – that was implemented and tested in an RCT was not continued after the RCT’s conclusion, despite showing the same or better outcomes for women in the intervention group compared with women allocated to usual care. We then discuss the conceptualisation and rationale leading to the use of the ‘Normalisation Process Model' as an aid to exploring aspects of implementation of a caseload midwifery model (where women are allocated a primary midwife for their care that has recently been evaluated by RCT. Discussion We demonstrate how the Normalisation Process Model was applied in planning of the evaluation phases of the RCT as a means of exploring the implementation of the caseload model of care. We argue that a theoretical understanding of

  20. Saving lives for a lifetime: supporting orphans and vulnerable children impacted by HIV/AIDS.

    Science.gov (United States)

    Nyberg, Beverly J; Yates, Dee Dee; Lovich, Ronnie; Coulibaly-Traore, Djeneba; Sherr, Lorraine; Thurman, Tonya Renee; Sampson, Anita; Howard, Brian

    2012-08-15

    President's Emergency Plan for AIDS Relief (PEPFAR's) response to the millions of children impacted by HIV/AIDS was to designate 10% of its budget to securing their futures, making it the leading supporter of programs reaching orphan and vulnerable children (OVC) programs globally. This article describes the evolution of PEPFAR's OVC response based on programmatic lessons learned and an evergrowing understanding of the impacts of HIV/AIDS. In launching this international emergency effort and transitioning it toward sustainable local systems, PEPFAR helped establish both the technical content and the central importance of care and support for OVC as a necessary complement to biomedical efforts to end the HIV/AIDS epidemic. Critical services are reaching millions of HIV-affected children and families through vast networks of community-based responders and strengthened national systems of care. But rapid program scale-up has at times resulted in inconsistent responses, failure to match resources to properly assessed needs, and a dearth of rigorous program evaluations. Key investments should continue to be directed toward more sustainable and effective responses. These include greater attention to children's most significant developmental stages, a focus on building the resilience of families and communities, a proper balance of government and civil society investments, and more rigorous evaluation and research to ensure evidence-based programming. Even as HIV prevalence declines and medical treatment improves and expands, the impacts of HIV/AIDS on children, families, communities, economies, and societies will continue to accumulate for generations. Protecting the full potential of children-and thus of societies-requires sustained and strategic global investments aligned with experience and science.

  1. Sustainable practice improvements: impact of the Comprehensive Advanced Palliative Care Education (CAPCE) program.

    Science.gov (United States)

    Harris, Diane; Hillier, Loretta M; Keat, Nancy

    2007-01-01

    This paper describes an education program designed to improve palliative care practice through the development of workplace hospice palliative care resources (PCRs), and its impact on knowledge transfer and longer-term changes to clinical practice. Evaluation methods included pre- and post-program questionnaires, and a survey of learners' (n=301) perceptions of program learning strategies. Interviews (n=21) were conducted with a purposeful sample of PCRs and representatives from their work sites. Ratings of the sessions indicated that they were relevant to learners' clinical practice. At follow up, the majority of learners (83%) continued to serve as PCRs. Many positive effects were identified, including enhanced pain and symptom management, staff education, and development of care policies and guidelines. Management support, particularly the prioritization of palliative care and staff development, were factors facilitating sustained implementation. These findings highlight the importance of multimodal learning strategies and supportive work environments in the development of PCRs to enhance palliative care practice.

  2. The challenges of orphan drugs and orphan diseases: real and imagined.

    Science.gov (United States)

    Hudson, I; Breckenridge, A

    2012-08-01

    The Orphan Drug Act of 1983 in the United States and similar legislation in Europe in 1999 provided incentives for companies to develop and sell medicines for diseases with a small market. In this Commentary, we outline the European position on the regulation of orphan drugs and explain where it differs from the regulation in the United States.

  3. Sustainability of the integrated chronic disease management model at primary care clinics in South Africa

    Science.gov (United States)

    Asmall, Shaidah

    2016-01-01

    Background An integrated chronic disease management (ICDM) model consisting of four components (facility reorganisation, clinical supportive management, assisted self-supportive management and strengthening of support systems and structures outside the facility) has been implemented across 42 primary health care clinics in South Africa with a view to improve the operational efficiency and patient clinical outcomes. Aim The aim of this study was to assess the sustainability of the facility reorganisation and clinical support components 18 months after the initiation. Setting The study was conducted at 37 of the initiating clinics across three districts in three provinces of South Africa. Methods The National Health Service (NHS) Institute for Innovation and Improvement Sustainability Model (SM) self-assessment tool was used to assess sustainability. Results Bushbuckridge had the highest mean sustainability score of 71.79 (95% CI: 63.70–79.89) followed by West Rand Health District (70.25 (95% CI: 63.96–76.53)) and Dr Kenneth Kaunda District (66.50 (95% CI: 55.17–77.83)). Four facilities (11%) had an overall sustainability score of less than 55. Conclusion The less than optimal involvement of clinical leadership (doctors), negative staff behaviour towards the ICDM, adaptability or flexibility of the model to adapt to external factors and infrastructure limitation have the potential to negatively affect the sustainability and scale-up of the model. PMID:28155314

  4. Sustainability of the integrated chronic disease management model at primary care clinics in South Africa.

    Science.gov (United States)

    Mahomed, Ozayr H; Asmall, Shaidah; Voce, Anna

    2016-11-17

    An integrated chronic disease management (ICDM) model consisting of four components (facility reorganisation, clinical supportive management, assisted self-supportive management and strengthening of support systems and structures outside the facility) has been implemented across 42 primary health care clinics in South Africa with a view to improve the operational efficiency and patient clinical outcomes. The aim of this study was to assess the sustainability of the facility reorganisation and clinical support components 18 months after the initiation. The study was conducted at 37 of the initiating clinics across three districts in three provinces of South Africa. The National Health Service (NHS) Institute for Innovation and Improvement Sustainability Model (SM) self-assessment tool was used to assess sustainability. Bushbuckridge had the highest mean sustainability score of 71.79 (95% CI: 63.70-79.89) followed by West Rand Health District (70.25 (95% CI: 63.96-76.53)) and Dr Kenneth Kaunda District (66.50 (95% CI: 55.17-77.83)). Four facilities (11%) had an overall sustainability score of less than 55. The less than optimal involvement of clinical leadership (doctors), negative staff behaviour towards the ICDM, adaptability or flexibility of the model to adapt to external factors and infrastructure limitation have the potential to negatively affect the sustainability and scale-up of the model.

  5. Rare diseases and orphan drugs

    Directory of Open Access Journals (Sweden)

    Domenica Taruscio

    2011-01-01

    Full Text Available According to the Regulation (EC N. 141/2000 of the European Parliament and of the Council, rare diseases are life-threatening or chronically debilitating conditions, affecting no more than 5 in 10 000 persons in the European Community. It is estimated that between 6000 to 8000 distinct rare diseases affect up to 6% of the total EU population. Therefore, these conditions can be considered rare if taken individually but they affect a significant proportion of the European population when considered as a single group. Several initiatives have been undertaken at international, European and national level to tackle public health as well as research issues related to the prevention, diagnosis, treatment and surveillance of these diseases. The development of innovative and effective medical products for their diagnosis and treatment is frequently hampered by several factors, including the limited knowledge of their natural history, the difficulties in setting up clinical studies due to the limited numbers of patients affected by a specific disease, the weak interest of sponsors due to the restricted market opportunities. Therefore, incentives and other facilitations have been adopted in many parts of the world, including in the EU, in order to facilitate the development and commercialization of diagnostic tools and treatments devoted to rare diseases. This paper illustrates mainly the European initiatives and will discuss the problematic and controversial aspects surrounding orphan drugs. Finally, activities and measures adopted in Italy are presented.

  6. Knowledge translation interventions to sustain direct care provider behaviour change in long-term care: A process evaluation.

    Science.gov (United States)

    Slaughter, Susan E; Bampton, Erin; Erin, Daniel F; Ickert, Carla; Wagg, Adrian S; Allyson Jones, C; Schalm, Corinne; Estabrooks, Carole A

    2017-07-10

    Process evaluation can be used to understand the factors influencing the impact of knowledge translation (KT) interventions. The aim of this mixed methods process evaluation was to evaluate the processes and perceived outcomes of eight KT interventions that were used with healthcare aides (HCAs) to introduce a mobility innovation into their daily care practices. The study examined the perceived effectiveness of various KT interventions in sustaining daily performance of the sit-to-stand mobility innovation by HCAs with residents in long-term care. In-person interviews were conducted with four leaders across three long-term care facilities. Seven focus groups with 27 HCAs were conducted across the three facilities. All participants were asked to rank the eight interventions involved in the trial according to their perceived effectiveness and, for the leaders, their perceived ease of implementation. Focus group and interview questions asked participants to discuss the relative merits of each KT intervention. Two research assistants coded all of the transcripts independently using content analysis. Both HCAs and their leaders perceived reminders, followed by discussion groups, to be the most effective KT interventions to sustain practice change. Healthcare aide champions were deemed least effective by both leaders and HCAs. Leaders identified both the focus group discussion and audit and feedback posters in the study as the most difficult to implement. Participants valued interventions that were strategically visible, helped to clarify misconceptions about the new care innovation, supported teamwork, and made visible the resident benefits of the care innovation. Logistical issues, such as staff scheduling and workload, influenced the perceived feasibility of the various KT interventions. Understanding how care staff in long-term care settings perceive KT interventions can inform the choice of future use of these interventions to move research evidence into practice.

  7. Family centred care before and during life-sustaining treatment withdrawal in intensive care: A survey of information provided to families by Australasian critical care nurses.

    Science.gov (United States)

    Ranse, Kristen; Bloomer, Melissa; Coombs, Maureen; Endacott, Ruth

    2016-11-01

    A core component of family-centred nursing care during the provision of end-of-life care in intensive care settings is information sharing with families. Yet little is known about information provided in these circumstances. To identify information most frequently given by critical care nurses to families in preparation for and during withdrawal of life-sustaining treatment. An online cross-sectional survey. During May 2015, critical care nurses in Australia and New Zealand were invited to complete the Preparing Families for Treatment Withdrawal questionnaire. Data analysis included descriptive statistics to identify areas of information most and least frequently shared with families. Cross tabulations with demographic data were used to explore any associations in the data. From the responses of 159 critical care nurses, information related to the emotional care and support of the family was most frequently provided to families in preparation for and during withdrawal of life-sustaining treatment. Variation was noted in the frequency of provision of information across body systems and their associated physical changes during the dying process. Significant associations (pnursing experience and critical care experiences and some of the information items most and least frequently provided. The provision of information during end-of-life care reflects a family-centred care approach by critical care nurses with information pertaining to emotional care and support of the family paramount. The findings of this study provide a useful framework for the development of interventions to improve practice and support nurses in communicating with families at this time. Copyright © 2016 Australian College of Critical Care Nurses Ltd. Published by Elsevier Ltd. All rights reserved.

  8. Sustainable Methods of Funding Health Care in Primary and Secondary Care for the Elderly

    OpenAIRE

    Khan, Anwar

    2015-01-01

    Clinical commissioning is a current health care management model for primary, secondary, and long term health care needs n United Kingdom nowadays. Form on 1 April 2013, Primary care trusts (PCTs) and strategic health authorities (SHAs) have been abolished. Clinical Commissioning Groups (CCGs) work with local authorities to address the wider determinants of health that is used to help people make positive changes to their lifestyle. NHS England (formerly the NHS Commissioning Board) and CCGs ...

  9. Creating a sustainable, participatory palliative care programme in an urban slum in Dhaka, Bangladesh.

    Science.gov (United States)

    Ahmad, Nezamuddin

    2018-01-01

    The Centre for Palliative Care, based at the only medical university [Bangabandhu Sheikh Mujib Medical University (BSMMU)] in Dhaka, Bangladesh, in collaboration with Worldwide Hospice Palliative Care Alliance, piloted a one-year project focussed on improving the quality of life of 100 older people and their families in two slum settings in Dhaka. This project was developed following the identification of significant palliative care needs of older people in the slum settings. In addition, the project was formed in response to the absence of programmes delivering palliative care to the poorest and most marginalised in poor urban settings, in a sustainable manner within the context of the low development of palliative care and the human and financial resource limitations in Bangladesh. The programme was developed using a participatory approach which focussed on engaging members of the community in the delivery of the project through the identification and training of 8 palliative care assistants from the slum setting itself, who delivered basic care supported by health professionals, the development of palliative care activists within the community and the engagement of the slum community leadership. The impact of the project showed improved quality of life for the target population and the potential for further development as a sustainable, community owned model over a further 2 years, which could be translated into other urban settings. This presentation will highlight lessons learned from the development and implementation of the project, and findings from the independent evaluation completed in December 2016, overseen by Glasgow University. The presentation will outline the successes and challenges of developing a participatory, community owned palliative care service within a slum in Dhaka, Bangladesh for older people and their families.

  10. Fair equality of opportunity critically reexamined: the family and the sustainability of health care systems.

    Science.gov (United States)

    Engelhardt, H Tristram

    2012-12-01

    A complex interaction of ideological, financial, social, and moral factors makes the financial sustainability of health care systems a challenge across the world. One difficulty is that some of the moral commitments of some health care systems collide with reality. In particular, commitments to equality in access to health care and to fair equality of opportunity undergird an unachievable promise, namely, to provide all with the best of basic health care. In addition, commitments to fair equality of opportunity are in tension with the existence of families, because families are aimed at advantaging their own members in preference to others. Because the social-democratic state is committed to fair equality of opportunity, it offers a web of publicly funded entitlements that make it easier for persons to exit the family and to have children outside of marriage. In the United States, in 2008, 41% of children were born outside of wedlock, whereas, in 1940, the percentage was only 3.8%, and in 1960, 5%, with the further consequence that the social and financial capital generated through families, which aids in supporting health care in families, is diminished. In order to explore the challenge of creating a sustainable health care system that also supports the traditional family, the claims made for fair equality of opportunity in health care are critically reconsidered. This is done by engaging the expository device of John Rawls's original position, but with a thin theory of the good that is substantively different from that of Rawls, one that supports a health care system built around significant copayments, financial counseling, and compulsory savings, with a special focus on enhancing the financial and social capital of the family. This radical recasting of Rawls, which draws inspiration from Singapore, is undertaken as a heuristic to aid in articulating an approach to health care allocation that can lead past the difficulties of social-democratic policy.

  11. Evaluation of a Memory Book intervention with orphaned children in South Africa.

    Science.gov (United States)

    Braband, Barbara J; Faris, Tamara; Wilson-Anderson, Kaye

    2014-01-01

    The purpose of this collaborative research study was to evaluate the use of the Memory Book intervention for orphaned children's grief and loss recovery. A qualitative phenomenological approach was implemented to evaluate the Memory Book intervention with orphaned children at two children's homes in South Africa. Study findings support the ability of children to work through loss and grief when they are assisted in preserving and telling their story. The Memory Book intervention assists children to chronicle their lives and demonstrates the potential to guide future interventions by care providers and nurses in this context. Copyright © 2014 Elsevier Inc. All rights reserved.

  12. Orphaned and Abused Youth Are Vulnerable to Pregnancy and Suicide Risk

    Science.gov (United States)

    Zapata, Lauren B.; Kissin, Dmitry M.; Bogoliubova, Olga; Yorick, Roman V.; Kraft, Joan Marie; Jamieson, Denise J.; Marchbanks, Polly A.; Hillis, Susan D.

    2013-01-01

    Objective: Little is known about the magnitude and consequences of violence against children for those living outside family care. We sought to estimate the frequency of childhood abuse and examine its association with lifetime pregnancy involvement (LPI) and past year suicide ideation among orphaned youth. Methods: We analyzed data collected via…

  13. Education and Nutritional Status of Orphans and Children of HIV-Infected Parents in Kenya

    Science.gov (United States)

    Mishra, Vinod; Arnold, Fred; Otieno, Fredrick; Cross, Anne; Hong, Rathavuth

    2007-01-01

    We examined whether orphaned and fostered children and children of HIV-infected parents are disadvantaged in schooling, nutrition, and health care. We analyzed data on 2,756 children aged 0-4 years and 4,172 children aged 6-14 years included in the 2003 Kenya Demographic and Health Survey, with linked anonymous HIV testing, using multivariate…

  14. Sustainable ubiquitous home health care--architectural considerations and first practical experiences.

    Science.gov (United States)

    Marschollek, Michael; Wolf, Klaus-H; Bott, Oliver-J; Geisler, Mirko; Plischke, Maik; Ludwig, Wolfram; Hornberger, Andreas; Haux, Reinhold

    2007-01-01

    Despite the abundance of past home care projects and the maturity of the technologies used, there is no widespread dissemination as yet. The absence of accepted standards and thus interoperability and the inadequate integration into transinstitutional health information systems (tHIS) are perceived as key factors. Based on the respective literature and previous experiences in home care projects we propose an architectural model for home care as part of a transinstitutional health information system using the HL7 clinical document architecture (CDA) as well as the HL7 Arden Syntax for Medical Logic Systems. In two short case studies we describe the practical realization of the architecture as well as first experiences. Our work can be regarded as a first step towards an interoperable - and in our view sustainable - home care architecture based on a prominent document standard from the health information system domain.

  15. Exclusion of orphan drugs for certain covered entities under 340B Program. Final rule.

    Science.gov (United States)

    2013-07-23

    HHS is issuing this final rule to clarify how section 340B(e) of the Public Health Service Act (PHSA) will be implemented. The final rule applies section 340B(e) of the PHSA only to drugs transferred, prescribed, sold, or otherwise used for the rare condition or disease for which the orphan drug was designated under section 526 of the Federal Food, Drug, and Cosmetic Act (FFDCA). The final rule also sets forth that it is the responsibility of the 340B covered entity to maintain auditable records that demonstrate compliance with the terms of the orphan drug exclusion requirements. This rule will provide clarity in the marketplace, maintain the 340B savings for newly-eligible covered entities, and protect the financial incentives for manufacturing orphan drugs designated for a rare disease or condition as indicated in the Affordable Care Act and intended by Congress.

  16. A survey of orphan enzyme activities

    Directory of Open Access Journals (Sweden)

    Pouliot Yannick

    2007-07-01

    Full Text Available Abstract Background Using computational database searches, we have demonstrated previously that no gene sequences could be found for at least 36% of enzyme activities that have been assigned an Enzyme Commission number. Here we present a follow-up literature-based survey involving a statistically significant sample of such "orphan" activities. The survey was intended to determine whether sequences for these enzyme activities are truly unknown, or whether these sequences are absent from the public sequence databases but can be found in the literature. Results We demonstrate that for ~80% of sampled orphans, the absence of sequence data is bona fide. Our analyses further substantiate the notion that many of these enzyme activities play biologically important roles. Conclusion This survey points toward significant scientific cost of having such a large fraction of characterized enzyme activities disconnected from sequence data. It also suggests that a larger effort, beginning with a comprehensive survey of all putative orphan activities, would resolve nearly 300 artifactual orphans and reconnect a wealth of enzyme research with modern genomics. For these reasons, we propose that a systematic effort to identify the cognate genes of orphan enzymes be undertaken.

  17. A survey of orphan enzyme activities

    Science.gov (United States)

    Pouliot, Yannick; Karp, Peter D

    2007-01-01

    Background Using computational database searches, we have demonstrated previously that no gene sequences could be found for at least 36% of enzyme activities that have been assigned an Enzyme Commission number. Here we present a follow-up literature-based survey involving a statistically significant sample of such "orphan" activities. The survey was intended to determine whether sequences for these enzyme activities are truly unknown, or whether these sequences are absent from the public sequence databases but can be found in the literature. Results We demonstrate that for ~80% of sampled orphans, the absence of sequence data is bona fide. Our analyses further substantiate the notion that many of these enzyme activities play biologically important roles. Conclusion This survey points toward significant scientific cost of having such a large fraction of characterized enzyme activities disconnected from sequence data. It also suggests that a larger effort, beginning with a comprehensive survey of all putative orphan activities, would resolve nearly 300 artifactual orphans and reconnect a wealth of enzyme research with modern genomics. For these reasons, we propose that a systematic effort to identify the cognate genes of orphan enzymes be undertaken. PMID:17623104

  18. The Sustainability of Evidence-Based Interventions and Practices in Public Health and Health Care.

    Science.gov (United States)

    Shelton, Rachel C; Cooper, Brittany Rhoades; Stirman, Shannon Wiltsey

    2018-01-12

    There is strong interest in implementation science to address the gap between research and practice in public health. Research on the sustainability of evidence-based interventions has been growing rapidly. Sustainability has been defined as the continued use of program components at sufficient intensity for the sustained achievement of desirable program goals and population outcomes. This understudied area has been identified as one of the most significant translational research problems. Adding to this challenge is uncertainty regarding the extent to which intervention adaptation and evolution are necessary to address the needs of populations that differ from those in which interventions were originally tested or implemented. This review critically examines and discusses conceptual and methodological issues in studying sustainability, summarizes the multilevel factors that have been found to influence the sustainability of interventions in a range of public health and health care settings, and highlights key areas for future research. Expected final online publication date for the Annual Review of Public Health Volume 39 is April 1, 2018. Please see http://www.annualreviews.org/page/journal/pubdates for revised estimates.

  19. In the Name of Sustainability

    DEFF Research Database (Denmark)

    Rasmussen, Louise Mubanda

    2017-01-01

    of ethnographic fieldwork with NGOs supporting ‘orphans and vulnerable children’ in Malawi, this article explores the practices, social relations and contradictory effects that the vision of sustainability engenders. The article illustrates how the commitment to sustainability paradoxically produces practices...

  20. Multi-Criteria Decision Analysis for Assessment and Appraisal of Orphan Drugs.

    Science.gov (United States)

    Iskrov, Georgi; Miteva-Katrandzhieva, Tsonka; Stefanov, Rumen

    2016-01-01

    Limited resources and expanding expectations push all countries and types of health systems to adopt new approaches in priority setting and resources allocation. Despite best efforts, it is difficult to reconcile all competing interests, and trade-offs are inevitable. This is why multi-criteria decision analysis (MCDA) has played a major role in recent uptake of value-based reimbursement. MCDA framework enables exploration of stakeholders' preferences, as well as explicit organization of broad range of criteria on which real-world decisions are made. Assessment and appraisal of orphan drugs tend to be one of the most complicated health technology assessment (HTA) tasks. Access to market approved orphan therapies remains an issue. Early constructive dialog among rare disease stakeholders and elaboration of orphan drug-tailored decision support tools could set the scene for ongoing accumulation of evidence, as well as for proper reimbursement decision-making. The objective of this study was to create an MCDA value measurement model to assess and appraise orphan drugs. This was achieved by exploring the preferences on decision criteria's weights and performance scores through a stakeholder-representative survey and a focus group discussion that were both organized in Bulgaria. Decision criteria that describe the health technology's characteristics were unanimously agreed as the most important group of reimbursement considerations. This outcome, combined with the high individual weight of disease severity and disease burden criteria, underlined some of the fundamental principles of health care - equity and fairness. Our study proved that strength of evidence may be a key criterion in orphan drug assessment and appraisal. Evidence is used not only to shape reimbursement decision-making but also to lend legitimacy to policies pursued. The need for real-world data on orphan drugs was largely stressed. Improved knowledge on MCDA feasibility and integration to HTA is of

  1. Nurses Improving the Care of Healthsystem Elders: creating a sustainable business model to improve care of hospitalized older adults.

    Science.gov (United States)

    Capezuti, Elizabeth A; Bricoli, Barbara; Briccoli, Barbara; Boltz, Marie P

    2013-08-01

    The Nurses Improving the Care of Healthsystem Elders (NICHE) program helps its more than 450 member sites to build the leadership capabilities to enact system-level change that targets the unique needs of older adults and embeds evidence-based geriatrics knowledge into practice. NICHE received expansion funding to establish a sustainable business model for operations while positioning the program to continue as a leader in innovative senior care programs. The expansion program focused on developing an internal business infrastructure, expanding NICHE-specific resources, creating a Web platform, increasing the number of participating NICHE hospitals, enhancing and expanding the NICHE benchmarking service, supporting research that generates evidence-based practices, fostering interorganizational collaboration, developing sufficient diversified revenue sources, and increasing the penetration and level of activity of current NICHE sites. These activities (improved services, Web-based tools, better benchmarking) added value and made it feasible to charge hospitals an annual fee for access and participation. NICHE does not stipulate how institutions should modify geriatric care; rather, NICHE principles and tools are meant to be adapted to each site's unique institutional culture. This article describes the historical context, the rationale, and the business plan that has resulted in successful organizational outcomes, including financial sustainability of the business operations of NICHE. © 2013, Copyright the Authors Journal compilation © 2013, The American Geriatrics Society.

  2. After The Demonstration: What States Sustained After the End of Federal Grants to Improve Children's Health Care Quality.

    Science.gov (United States)

    Ireys, Henry T; Brach, Cindy; Anglin, Grace; Devers, Kelly J; Burton, Rachel

    2018-02-01

    Introduction Under the CHIPRA Quality Demonstration Grant Program, CMS awarded $100 million through 10 grants that 18 state Medicaid agencies implemented between 2010 and 2015. The program's legislatively-mandated purpose was to evaluate promising ideas for improving the quality of children's health care provided through Medicaid and CHIP. As part of the program's multifaceted evaluation, this study examined the extent to which states sustained key program activities after the demonstration ended. Methods We identified 115 potentially sustainable elements within states' CHIPRA demonstrations and analyzed data from grantee reports and key informant interviews to assess sustainment outcomes and key influential factors. We also assessed sustainment of the projects' intellectual capital. Results 56% of potentially sustainable elements were sustained. Sustainment varied by topic area: Elements related to quality measure reporting and practice facilitation were more likely to be sustained than others, such as parent advisors. Broad contextual factors, the state's Medicaid environment, implementation partners' resources, and characteristics of the demonstration itself all shaped sustainment outcomes. Discussion Assessing sustainment of key elements of states' CHIPRA quality demonstration projects provides insight into the fates of the "promising ideas" that the grant program was designed to examine. As a result of the federal government's investment in this grant program, many demonstration states are in a strong position to extend and spread specific strategies for improving the quality of care for children in Medicaid and CHIP. Our findings provide insights for policymakers and providers working to improve the quality of health care for low income children.

  3. Optimising impact and sustainability: a qualitative process evaluation of a complex intervention targeted at compassionate care.

    Science.gov (United States)

    Bridges, Jackie; May, Carl; Fuller, Alison; Griffiths, Peter; Wigley, Wendy; Gould, Lisa; Barker, Hannah; Libberton, Paula

    2017-12-01

    Despite concerns about the degree of compassion in contemporary healthcare, there is a dearth of evidence for health service managers about how to promote compassionate healthcare. This paper reports on the implementation of the Creating Learning Environments for Compassionate Care (CLECC) intervention by four hospital ward nursing teams. CLECC is a workplace educational intervention focused on developing sustainable leadership and work-team practices designed to support team relational capacity and compassionate care delivery. To identify and explain the extent to which CLECC was implemented into existing work practices by nursing staff, and to inform conclusions about how such interventions can be optimised to support compassionate care in acute settings. Process evaluation guided by normalisation process theory. Data gathered included staff interviews (n=47), observations (n=7 over 26 hours) and ward manager questionnaires on staffing (n=4). Frontline staff were keen to participate in CLECC, were able to implement many of the planned activities and valued the benefits to their well-being and to patient care. Nonetheless, factors outside of the direct influence of the ward teams mediated the impact and sustainability of the intervention. These factors included an organisational culture focused on tasks and targets that constrained opportunities for staff mutual support and learning. Relational work in caregiving organisations depends on individual caregiver agency and on whether or not this work is adequately supported by resources, norms and relationships located in the wider system. High cognitive participation in compassionate nursing care interventions such as CLECC by senior nurse managers is likely to result in improved impact and sustainability. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2017. All rights reserved. No commercial use is permitted unless otherwise expressly granted.

  4. History of Orphan Drug Regulation-United States and Beyond.

    Science.gov (United States)

    Haffner, M E

    2016-10-01

    The US Orphan Drug Act, passed in 1982, was the first orphan drug legislation in the world. It is a law based on economic incentives making it financially possible for pharmaceutical firms to develop products for small patient populations. Since passage, many additional countries have developed orphan drug programs and many pharmaceutical firms have developed around the orphan program. Today, more than 500 drugs for rare diseases have been developed in the United States. © 2016 American Society for Clinical Pharmacology and Therapeutics.

  5. Population, Reproduction and IVF in New Caledonia: Exploring Sociocultural and Caring Dimensions of Sustainable Development

    Directory of Open Access Journals (Sweden)

    Nicola Jane Marks

    2017-10-01

    Full Text Available Abstract Both sustainability and sustainable development have multiple meanings that are underpinned by diverse normative visions. Nonetheless, sustainable development is currently centre-stage at the global level. The main goal of this paper is to critically examine these important concepts, in particular their social and cultural dimensions, and to make a conceptual offering: that of ‘caring sustainable development.’ This way of thinking about sustainable development aims to grapple in a situated way with the different normative underpinnings of sustainability in order to support the building of a common future. The paper briefly examines populations, reproduction (both biological and sociocultural and human in vitro fertilization (IVF, as important sites for thinking about caring sustainable development. It draws on research in New Caledonia examining which populations and which sociocultural social practices are encouraged or sustained, or not. It finds that historically there are many examples of things and people being neglected and not cared for, or being encouraged to ‘develop’ in problematic ways. By contrast, recent practices associated with IVF suggest ways forward that would enable caring sustainable development. Résumé La durabilité et le développement durable ont des significations multiples, qui sont sous-tendues par diverses visions normatives. Néanmoins, le développement durable occupe actuellement une place centrale sur le plan mondial. Le but principal de cet article est d’examiner de manière critique ces concepts importants, en particulier leurs dimensions sociales et culturelles, et de faire une contribution conceptuelle qui est celle de la notion du ‘care dans le développement durable ’. Cette façon de penser au développement durable vise à aborder ces différents fondements normatifs, de façon localisée, pour soutenir la construction à long terme d’un futur commun. L’article examine ensuite

  6. When everyone is an orphan: against adopting a U.S.-styled orphan drug policy in Canada.

    Science.gov (United States)

    Herder, Matthew

    2013-01-01

    Putting aside whether diseases that affect only small numbers of people ("rare diseases") should be prioritized over diseases that are otherwise orphaned, in this article I argue that a new approach to rare, orphan diseases is needed. The current model, first signaled by the United States' Orphan Drug Act and subsequently emulated by several other jurisdictions, relies on a set of open-ended criteria and market-based incentives in order to define and encourage drug therapies for rare, orphan diseases. Given a) the biopharmaceutical industries' growing interest in orphan diseases, b) progress in the sphere of personalized medicines enabling more and more common diseases to be reclassified as rare, and c) empirical evidence suggesting that the most orphan drugs target only a limited, lucrative subset of rare diseases, I argue that Canada, which recently announced plans to develop its own "orphan drug framework" should not follow the United States' orphan drug model.

  7. Enriching Orphans' Potentials through Interpersonal and Intrapersonal Intelligence Enrichment Activities

    Science.gov (United States)

    Azid, Nurulwahida Hj; Yaacob, Aizan

    2016-01-01

    Orphans are considered a minority and they should be given a greater emphasis so that they do not feel left out and can build their own lives without a sense of humility. This does not mean that the orphans should be pampered instead they should be given the confidence and motivation to strive for success in later life. Humility among orphans can…

  8. Factors associated with internalising problems in orphans and their ...

    African Journals Online (AJOL)

    Factors associated with internalising problems in orphans and their caregivers in rural mozambique. P Libombo, H Baker-Henningham, S Grantham-Mcgregor. Abstract. Objectives: To compare internalising problems reported by orphans and their caregivers with that of non-orphans and their caregivers. Design: Case ...

  9. Psychological distress and its predictors in AIDS orphan ...

    African Journals Online (AJOL)

    Back ground: In developing countries the number of children orphaned by AIDS is growing rapidly. Consequently, the psychological well-being of these children has become a serious concern. Objectives: To assess the psychological distress of AIDS orphans as compared to non-AIDS orphan adolescents and factors ...

  10. The experiences of AIDS orphans living in a township

    Directory of Open Access Journals (Sweden)

    Esmeralda Ricks

    2012-02-01

    Full Text Available An overwhelming challenge to health-care professionals today, is the rendering of care services to AIDS orphans. This article is based on a study that explored and described the lived experiences of AIDS orphans in a township in order to understand their ‘life world’ as AIDS orphans. A further purpose was to provide information to primary health-care nurses (PHCNs, related professionals and partners involved in the care of these children, so that they could plan a care response to meet the orphans’ unique needs. A qualitative research design that used an explorative, descriptive, contextual and phenomenological strategy of inquiry was employed. Data were collected by means of in-depth interviews from a purposively selected sample, and were analysed according to the steps of qualitative data analysis proposed by Tesch (Creswell 1994. Guba’s model was used to ensure the trustworthiness of the qualitative data. Two main themes and their sub-themes were identified. The first theme was that children experience devastating changes in their life circumstances when they become AIDS orphans. The second theme highlighted how the participants rediscovered hope to persevere. Recommendations directed at nursing practice, education and research, were made based upon the findings.

    Opsomming

    ‘n Uitdaging wat professionele gesondheidswerkers huidiglik oorweldig, is dienslewering aan VIGS weeskinders. Die doel van die studie was om die geleefde ervaring van kinders wat in dorpsgebiede woon en VIGS weeskinders geword het, te verken en te beskryf ten einde hul leefwêreld te verstaan. Hierdie inligting kan deur Primêre Gesondheidsorg Verpleegkundiges (PVGs, verwante beroepslui en vennote betrokke by die versorging van hierdie kinders, gebruik word as basis om versorging te beplan wat in die kinders se unieke behoeftes sal voorsien. ‘n Kwalitatiewe navorsingsontwerp met verkennende, beskrywende, kontekstuele en fenomologiese

  11. Sustainability of Long-term Care: Puzzling Tasks Ahead for Policy-Makers.

    Science.gov (United States)

    Mosca, Ilaria; van der Wees, Philip J; Mot, Esther S; Wammes, Joost J G; Jeurissen, Patrick P T

    2016-08-17

    The sustainability of long-term care (LTC) is a prominent policy priority in many Western countries. LTC is one of the most pressing fiscal issues for the growing population of elderly people in the European Union (EU) Member States. Country recommendations regarding LTC are prominent under the EU's European Semester. This paper examines challenges related to the financial- and organizational sustainability of LTC systems in the EU. We combined a targeted literature review and a descriptive selected country analysis of: (1) public- and private funding; (2) informal care and externalities; and (3) the possible role of technology in increasing productivity. Countries were selected via purposive sampling to establish a cohort of country cases covering the spectrum of differences in LTC systems: public spending, private funding, informal care use, informal care support, and cash benefits. The aging of the population, the increasing gap between availability of informal care and demand for LTC, substantial market failures of private funding for LTC, and fiscal imbalances in some countries, have led to structural reforms and enduring pressures for LTC policy-makers across the EU. Our exploration of national policies illustrates different solutions that attempt to promote fairness while stimulating efficient delivery of services. Important steps must be taken to address the sustainability of LTC. First, countries should look deeper into the possibilities of complementing public- and private funding, as well as at addressing market failures of private funding. Second, informal care externalities with spill-over into neighboring policy areas, the labor force, and formal LTC workers, should be properly addressed. Thirdly, innovations in LTC services should be stimulated to increase productivity through technology and process innovations, and to reduce costs. The analysis shows why it is difficult for EU Member State governments to meet all their goals for sustainable LTC

  12. Sustainability of Long-term Care: Puzzling Tasks Ahead for Policy-Makers

    Directory of Open Access Journals (Sweden)

    Ilaria Mosca

    2017-04-01

    Full Text Available Background The sustainability of long-term care (LTC is a prominent policy priority in many Western countries. LTC is one of the most pressing fiscal issues for the growing population of elderly people in the European Union (EU Member States. Country recommendations regarding LTC are prominent under the EU’s European Semester. Methods This paper examines challenges related to the financial- and organizational sustainability of LTC systems in the EU. We combined a targeted literature review and a descriptive selected country analysis of: (1 public- and private funding; (2 informal care and externalities; and (3 the possible role of technology in increasing productivity. Countries were selected via purposive sampling to establish a cohort of country cases covering the spectrum of differences in LTC systems: public spending, private funding, informal care use, informal care support, and cash benefits. Results The aging of the population, the increasing gap between availability of informal care and demand for LTC, substantial market failures of private funding for LTC, and fiscal imbalances in some countries, have led to structural reforms and enduring pressures for LTC policy-makers across the EU. Our exploration of national policies illustrates different solutions that attempt to promote fairness while stimulating efficient delivery of services. Important steps must be taken to address the sustainability of LTC. First, countries should look deeper into the possibilities of complementing public- and private funding, as well as at addressing market failures of private funding. Second, informal care externalities with spill-over into neighboring policy areas, the labor force, and formal LTC workers, should be properly addressed. Thirdly, innovations in LTC services should be stimulated to increase productivity through technology and process innovations, and to reduce costs. Conclusion The analysis shows why it is difficult for EU Member State

  13. Implementing and sustaining transformational change in health care: lessons learnt about clinical process redesign.

    Science.gov (United States)

    McGrath, Katherine M; Bennett, Denise M; Ben-Tovim, David I; Boyages, Steven C; Lyons, Nigel J; O'Connell, Tony J

    2008-03-17

    *Clinical process redesign has enabled significant improvements in the delivery of health care services in emergency departments and elective surgery programs in New South Wales and at Flinders Medical Centre in South Australia, with tangible benefits for patients and staff. *The principles used in clinical process redesign are not new; they have been applied in other industries with significant gains for many years, but have only recently been introduced into health care systems. *Through experience with clinical process redesign, we have learnt much about the factors critical to the success of implementing and sustaining this process in the health care setting. *The key elements for success are leadership by senior executives, clinical leadership, team-based problem solving, a focus on the patient journey, access to data, ambitious targets, strong performance management, and a process for maintaining improvement.

  14. Academic psychiatry and health care reform: strategic initiatives for sustaining the clinical mission.

    Science.gov (United States)

    McCabe, O Lee; Gwon, Howard S; McHugh, Paul R; Breakey, William R; Schwartz, Joseph M; Clark, Michael R; Kaminsky, Michael J

    2003-02-01

    Health care reform has posed special challenges for departments of psychiatry in academic medical centers. This report describes one department's strategic responses to a marketplace with high penetration by managed care and provides examples of the kinds of faculty concerns that can arise when major departmental reorganizations are attempted. The department's successful adaptation to a radically altered professional environment is attributed to the following five initiatives: vertical integration and diversification of clinical programs, service line management, outcomes measurement, regional network development, and institutional managed care partnerships Although the authors did not design their adaptive efforts as a research study, they offer objective data to support their conclusion that the viability of their overall clinical enterprise has been sustained despite an external environment inhospitable to academic psychiatry.

  15. Developing sustainable trauma care education in Egypt: sequential trauma education program, steps to success.

    Science.gov (United States)

    El-Shinawi, Mohamed; McCunn, Maureen; Sisley, Amy C; El-Setouhy, Maged; Hirshon, Jon Mark

    2015-01-01

    As one of the leading causes of death and disability in the world, human trauma and injury disproportionately affects individuals in developing countries. To meet the need for improved trauma care in Egypt, the Sequential Trauma Emergency/Education ProgramS (STEPS) course was created through the collaborative effort of U.S. and Egyptian physicians. The objective of course development was to create a high-quality, modular, adaptable, and sustainable trauma care course that could be readily adopted by a lower- or middle-income country. We describe the development, transition, and host nation sustainability of a trauma care training course between a high-income Western nation and a lower-middle-income Middle Eastern/Northern African country, including the number of physicians trained and the challenges to program development and sustainability. STEPS was developed at the University of Maryland, based in part on World Health Organization's Emergency and Trauma Care materials, and introduced to the Egyptian Ministry of Health and Population and Ain Shams University in May 2006. To date, 639 physicians from multiple specialties have taken the 4-day course through the Ministry of Health and Population or public/governmental universities. In 2008, the course transitioned completely to the leadership of Egyptian academic physicians. Multiple Egyptian medical schools and the Egyptian Emergency Medicine Board now require STEPS or its equivalent for physicians in training. Success of this collaborative educational program is demonstrated by the numbers of physicians trained, the adoption of STEPS by the Egyptian Emergency Medicine Board, and program continuance after transitioning to in-country leadership and trainers. Copyright © 2015 Association of Program Directors in Surgery. Published by Elsevier Inc. All rights reserved.

  16. When Should We Care About Sustainability? Applying Human Security as the Decisive Criterion

    Directory of Open Access Journals (Sweden)

    Alexander K. Lautensach

    2012-05-01

    Full Text Available It seems intuitively clear that not all human endeavours warrant equal concern over the extent of their sustainability. This raises the question about what criteria might best serve for their prioritisation. We refute, on empirical and theoretical grounds, the counterclaim that sustainability should be of no concern regardless of the circumstances. Human security can serve as a source of criteria that are both widely shared and can be assessed in a reasonably objective manner. Using established classifications, we explore how four forms of sustainability (environmental, economic, social, and cultural relate to the four pillars of human security (environmental, economic, sociopolitical, and health-related. Our findings, based on probable correlations, suggest that the criteria of human security allow for a reliable discrimination between relatively trivial incidences of unsustainable behavior and those that warrant widely shared serious concern. They also confirm that certain sources of human insecurity, such as poverty or violent conflict, tend to perpetuate unsustainable behavior, a useful consideration for the design of development initiatives. Considering that human security enjoys wide and increasing political support among the international community, it is to be hoped that by publicizing the close correlation between human security and sustainability greater attention will be paid to the latter and to its careful definition.

  17. Health service planning and sustainable development: considering what, where and how care is delivered through a pro-environmental lens.

    Science.gov (United States)

    Desmond, Sharon

    2017-03-02

    The aim of the present paper was to review the opportunities currently available to health service planners to advance sustainable development in their future-facing roles within health service organisation. Critical challenges and enablers to facilitate health services planners in adopting a pro-environmental lens are discussed. What is known about the topic? Despite its harmful effect on the environment, health has been slower than other industries to embrace the sustainable development agenda. The attitudes and knowledge base of health service planners with regard to environmental sustainability has not been widely studied. For health service planners, embracing pro-environmental considerations in sustainable model of care development is a powerful opportunity to review care paradigms and prepare for the implementation of meaningful, improved health and system efficiency. What does this paper add? This paper advances the case for health service planners to embrace a pro-environmental stance and guides health service leaders in the preparation and implementation of sustainable and improved health and system efficiency. What are the implications for practitioners? Health service planers are in an ideal position to champion the sustainable development agenda as they explore what care is delivered, how care is delivered and where care is delivered. External policy, health service leadership and carbon literacy are advanced as critical contextual factors to facilitate the key role that health service planners can play in building sustainable healthcare organisations.

  18. Payment reform in the patient-centered medical home: Enabling and sustaining integrated behavioral health care.

    Science.gov (United States)

    Miller, Benjamin F; Ross, Kaile M; Davis, Melinda M; Melek, Stephen P; Kathol, Roger; Gordon, Patrick

    2017-01-01

    The patient-centered medical home (PCMH) is a promising framework for the redesign of primary care and more recently specialty care. As defined by the Agency for Healthcare Research and Quality, the PCMH framework has 5 attributes: comprehensive care, patient-centered care, coordinated care, accessible services, and quality and safety. Evidence increasingly demonstrates that for the PCMH to best achieve the Triple Aim (improved outcomes, decreased cost, and enhanced patient experience), treatment for behavioral health (including mental health, substance use, and life stressors) must be integrated as a central tenet. However, challenges to implementing the PCMH framework are compounded for real-world practitioners because payment reform rarely happens concurrently. Nowhere is this more evident than in attempts to integrate behavioral health clinicians into primary care. As behavioral health clinicians find opportunities to work in integrated settings, a comprehensive understanding of payment models is integral to the dialogue. This article describes alternatives to the traditional fee for service (FFS) model, including modified FFS, pay for performance, bundled payments, and global payments (i.e., capitation). We suggest that global payment structures provide the best fit to enable and sustain integrated behavioral health clinicians in ways that align with the Triple Aim. Finally, we present recommendations that offer specific, actionable steps to achieve payment reform, complement PCMH, and support integration efforts through policy. (PsycINFO Database Record (c) 2017 APA, all rights reserved).

  19. Developing a Sustainable Need-Based Pediatric Acute Care Training Curriculum in Solomon Islands

    Directory of Open Access Journals (Sweden)

    Daniel Ta Yo Yu

    2017-04-01

    Full Text Available BackgroundThe Johns Hopkins Hospital Pediatric Emergency Department (PED was invited to collaborate with the National Referral Hospital (NRH, Solomon Islands, to establish an acute care pediatric education program for the country’s inaugural class of national medical graduate trainees.ObjectiveTo develop and evaluate a sustainable, need-based post-graduate training curriculum in pediatric acute care, resuscitation, and point-of-care ultrasound.MethodsA need-based training curriculum was developed utilizing the ADDIE model and was implemented and revised over the course of 2 years and two site visits. Implementation followed a train-the-trainer model. The curriculum consisted of high-yield didactics including workshops, simulations, hands-on ultrasound sessions, and lectures at the NRH. A mixed-methods design was used to evaluate the curriculum, including pre/posttesting, qualitative group discussions, and individual surveys. The curriculum was revised in response to ongoing learner evaluations and needs assessments. Continuing educational sessions after the site visit demonstrated sustainability.ResultsThe curriculum included 19 core topics with 42 teaching sessions during the two site visits. A total of 135 pre/posttests and 366 individual surveys were collected from 46 trainees. Completion rates were 78.2% for surveys and 71.3% for pre/posttests. Pre/posttest scores increased from 44 to 63% during the first site visit and 69.6 to 77.6% during the second. Learners reported a mean 4.81/5 on a standard Likert scale for curriculum satisfaction. Group discussions and surveys highlighted key areas of knowledge growth, important clinical care advances, and identified further needs. Initial sustainability was demonstrated by continued ultrasound sessions led by local graduate trainees.ConclusionA collaborative team including Johns Hopkins PED staff, Solomon Islands’ graduate trainees, and NRH administration initiated a professional education

  20. Orphans in the Dead Sea Scrolls

    African Journals Online (AJOL)

    2016-08-12

    Aug 12, 2016 ... Orphans are often mentioned in the literature of the ancient Near East, including the writings of the Hebrew Bible.1 These ... A few well-known examples from ancient Near Eastern texts should suffice to illustrate this point. A hymn to Nanshe says of the ...... Society, Israel Museum. Campbell, J.G., 1995, The ...

  1. No Price Pressure On Orphan Drugs (Yet).

    Science.gov (United States)

    Silverman, Ed

    2017-06-01

    Sales of orphan drugs are forecast to grow 11% over the next five years, to $209 billion. That growth rate is twice as fast as the expected increase in sales of all other prescription medicines. They may account for more than 21% of brand-name prescription drug sales by 2022.

  2. Orphan Drug Debate: A Cheat Sheet.

    Science.gov (United States)

    Patel, Krishna R

    2017-06-01

    In some respects, the 1983 Orphan Drug Act is a success story. But high prices and allegations that some drug companies have twisted the law to their advantage have made it controversial. Here are some of the main points in the debate.

  3. The African Orphan Crisis and International Adoption

    Science.gov (United States)

    Roby, Jini L.; Shaw, Stacey A.

    2006-01-01

    The plight of Africa's AIDS orphans has reached crisis proportions, and the international community is beginning to mobilize at the family, community, national, and international levels. Despite these encouraging efforts, the response is inadequate, and increased attention and action are needed. The authors suggest that international adoption,…

  4. THE CARE OF PERSONAL HEALTH AS A PART OF SUSTAINABLE HEALTHCARE DEVELOPMENT

    Directory of Open Access Journals (Sweden)

    Kalina Peycheva

    2017-06-01

    Full Text Available Active participation and personal responsibility of patients for their own health are necessary to realise the idea of the sustainable development of health care. Aim: To study the readiness of patients to take personal responsibility for their health. Material and Methods:A questionnaire was prepared for the purposes of the study.The methods utilised were a direct individual anonymous questionnaire, statistical – descriptive, analytical (hi – square. The answers were examined and statistically processed according to age, gender and education level of the participants. Results: 1. 92,7 % of those between 18-24 years old answered, that the decision to change their lifestyle in order to prevent disease, depend on the deprivation they have to suffer. 2. Only ¼ are responsible for their health, while the ones who know they have to do it, but they do not are 12,2%. 3. University graduates pay more attention and take more care for their health. 4. Lack of time is the primary reason patients cite for not taking care of their health. 5. Few could read the labels – only 9,6%. The remaining over 90 % do not understand the labels. 6. Gender wise – women are more responsible and have higher health education. Conclusions: The lack of health education and care, using the lack of time as an excuse, as well as the reluctance to compromise and deprivation for health’s sake, demonstrate the lack of sustainability of health care system with respect to health education and promotion.

  5. Process Evaluation: Standard, Effectiveness, Efficiency and Sustainability of Maternity Nursing Care

    Directory of Open Access Journals (Sweden)

    Laili Rahayuwati

    2017-09-01

    Full Text Available Although globally there is a change in the trend of epidemiology from infectious diseases to chronic diseases, the prevalence and incidence of infectious diseases as well as MMR (Maternal Mortality Rate and IMR (infant mortality rate in Indonesia is still high. In year 2000, Faculty of Nursing of the Universitas Padjadjaran in collaboration with Hasan Sadikin Hospital built a model of treatment room, which was affiliated with obstetric gynecology room for improving integrated quality of health care services and education. The model built in this room aimed to : 1 Improve the quality of health care service; 2 to develop the student’s experiences with patients; 3 Provide quality nurse education to support students; 4 encourage students to improve the results of clinical prctice. The objective of process evaluation in this study was to give an insight to an appropriate model for maternity nursing service. This results showed on the one hand , there are some records not yet achieved an ideal standard , lack of effectiveness and efficiency of care delivery, namely: 1 the ratio of midwives and patients are not ideal ; 2 No one consultant obstetrician gynecologist and one doctor for every room . As well as challenges to sustainability care that meets the standards of maternity care. Conclusion: this study recommends to take a comprehensive strategic planning for improving nursing and midwifery services that involve all relevant stakeholders in the government, civil society, service delivery, education, and professional organizations.

  6. Are Physicians Obliged to Lead Environmental Sustainability Efforts in Health Care Organizations?

    Science.gov (United States)

    Macpherson, Cheryl C; Hill, Jonathan

    2017-12-01

    Climate change threatens health, health care, and the industries and resources upon which these depend. The growing prevalence and severity of its health consequences and economic costs are alarming health professionals and organizations as their professional obligations, grounded in the core value of health, include protecting against these harms. One means of fulfilling these obligations is to lead or support sustainability initiatives that are built upon current, reliable, accurate, and unbiased evidence and collaboratively tailored to meet specific needs and respond to specific contexts. We consider why and how health professionals and organizations should lead or support such initiatives. © 2017 American Medical Association. All Rights Reserved.

  7. Sustainable HIV treatment in Africa through viral-load-informed differentiated care

    DEFF Research Database (Denmark)

    Phillips, Andrew; Shroufi, Amir; Vojnov, Lara

    2015-01-01

    every 6 months, but patients are rarely switched to second-line therapies. To ensure sustainability of treatment programmes, a transition to more cost-effective delivery of antiretroviral therapy is needed. In contrast to the CD4 count, measurement of the level of HIV RNA in plasma (the viral load...... to a second-line regimen. The most feasible approach to measuring viral load in many countries is to collect dried blood spot samples for testing in regional laboratories; however, there have been concerns over the sensitivity and specificity of this approach to define treatment failure and the delay...... in returning results to the clinic. We use modelling to synthesize evidence and evaluate the cost-effectiveness of viral-load-informed differentiated care, accounting for limitations of dried blood sample testing. We find that viral-load-informed differentiated care using dried blood sample testing is cost...

  8. House calls for seniors: building and sustaining a model of care for homebound seniors.

    Science.gov (United States)

    Beck, Robin A; Arizmendi, Alejandro; Purnell, Christianna; Fultz, Bridget A; Callahan, Christopher M

    2009-06-01

    Homebound seniors suffer from high levels of functional impairment and are high-cost users of acute medical services. This article describes a 7-year experience in building and sustaining a physician home visit program. The House Calls for Seniors program was established in 1999. The team includes a geriatrician, geriatrics nurse practitioner, and social worker. The program hosts trainees from multiple disciplines. The team provides care to 245 patients annually. In 2006, the healthcare system (62%), provider billing (36%), and philanthropy (2%) financed the annual program budget of $355,390. Over 7 years, the team has enrolled 468 older adults; the mean age was 80, 78% were women, and 64% were African American. One-third lived alone, and 39% were receiving Medicaid. Reflecting the disability of this cohort, 98% had impairment in at least one instrumental activity of daily living (mean 5.2), 71% had impairment in at least one activity of daily living (mean 2.6), 53% had a Mini-Mental State Examination score of 23 or less, 43% were receiving services from a home care agency, and 69% had at least one new geriatric syndrome diagnosed by the program. In the year after intake into the program, patients had an average of nine home visits; 21% were hospitalized, and 59% were seen in the emergency department. Consistent with the program goals, primary care, specialty care, and emergency department visits declined in the year after enrollment, whereas access and quality-of-care targets improved. An academic physician house calls program in partnership with a healthcare system can improve access to care for homebound frail older adults, improve quality of care and patient satisfaction, and provide a positive learning experience for trainees.

  9. Nurses' knowledge of universal health coverage for inclusive and sustainable elderly care services

    Directory of Open Access Journals (Sweden)

    Fabian Ling Ngai Tung

    2016-01-01

    Full Text Available Objectives: to explore nurses' knowledge of universal health coverage (UHC for inclusive and sustainable development of elderly care services. Method: this was a cross-sectional survey. A convenience sample of 326 currently practicing enrolled nurses (EN or registered nurses (RN was recruited. Respondents completed a questionnaire which was based on the implementation strategies advocated by the WHO Global Forum for Governmental Chief Nursing Officers and Midwives (GCNOMs. Questions covered the government initiative, healthcare financing policy, human resources policy, and the respondents' perception of importance and contribution of nurses in achieving UHC in elderly care services. Results: the knowledge of nurses about UHC in elderly care services was fairly satisfactory. Nurses in both clinical practice and management perceived themselves as having more contribution and importance than those in education. They were relatively indifferent to healthcare policy and politics. Conclusion: the survey uncovered a considerable knowledge gap in nurses' knowledge of UHC in elderly care services, and shed light on the need for nurses to be more attuned to healthcare policy. The educational curriculum for nurses should be strengthened to include studies in public policy and advocacy. Nurses can make a difference through their participation in the development and implementation of UHC in healthcare services.

  10. 'Nobody cares about the environment’: Kyrgyz' perspectives on enhancing environmental sustainable consumption practices when facing limited sustainability awareness

    NARCIS (Netherlands)

    Shadymanova, J.; Wahlen, S.; Horst, van der H.M.

    2014-01-01

    Within Western societies, the detrimental consequences of mass consumption on the environment have long been identified. Consumers have developed sustainability consciousness in accordance with research and policies. In non-Western societies, however, experiences with mass consumption have not been

  11. 21 CFR 316.21 - Verification of orphan-drug status.

    Science.gov (United States)

    2010-04-01

    ... 526(a) of the act, the sponsor shall include in its request to FDA for orphan-drug designation under... 21 Food and Drugs 5 2010-04-01 2010-04-01 false Verification of orphan-drug status. 316.21 Section...) DRUGS FOR HUMAN USE ORPHAN DRUGS Designation of an Orphan Drug § 316.21 Verification of orphan-drug...

  12. The orphaning experience: descriptions from Ugandan youth who have lost parents to HIV/AIDS

    Directory of Open Access Journals (Sweden)

    Ssebunnya Joshua

    2010-02-01

    Full Text Available Abstract The HIV/AIDS epidemic has continued to pose significant challenges to countries in Sub-Saharan Africa. Millions of African children and youth have lost parents to HIV/AIDS leaving a generation of orphans to be cared for within extended family systems and communities. The experiences of youth who have lost parents to the HIV/AIDS epidemic provide an important ingress into this complex, evolving, multi-dimensional phenomenon. A fundamental qualitative descriptive study was conducted to develop a culturally relevant and comprehensive description of the experiences of orphanhood from the perspectives of Ugandan youth. A purposeful sample of 13 youth who had lost one or both parents to HIV/AIDS and who were affiliated with a non-governmental organization providing support to orphans were interviewed. Youth orphaned by HIV/AIDS described the experience of orphanhood beginning with parental illness, not death. Several losses were associated with the death of a parent including lost social capitol, educational opportunities and monetary assets. Unique findings revealed that youth experienced culturally specific stigma and conflict which was distinctly related to their HIV/AIDS orphan status. Exploitation within extended cultural family systems was also reported. Results from this study suggest that there is a pressing need to identify and provide culturally appropriate services for these Ugandan youth prior to and after the loss of a parent(s.

  13. Modeling and Deorphanization of Orphan GPCRs.

    Science.gov (United States)

    Diaz, Constantino; Angelloz-Nicoud, Patricia; Pihan, Emilie

    2018-01-01

    Despite tremendous efforts, approximately 120 GPCRs remain orphan. Their physiological functions and their potential roles in diseases are poorly understood. Orphan GPCRs are extremely important because they may provide novel therapeutic targets for unmet medical needs. As a complement to experimental approaches, molecular modeling and virtual screening are efficient techniques to discover synthetic surrogate ligands which can help to elucidate the role of oGPCRs. Constitutively activated mutants and recently published active structures of GPCRs provide stimulating opportunities for building active molecular models for oGPCRs and identifying activators using virtual screening of compound libraries. We describe the molecular modeling and virtual screening process we have applied in the discovery of surrogate ligands, and provide examples for CCKA, a simulated oGPCR, and for two oGPCRs, GPR52 and GPR34.

  14. CERN - FATE MAPS - ENTANGLEMENTS - I Poor Orphan

    OpenAIRE

    Rogers, Kathleen

    2017-01-01

    I Poor Orphan, forms part of a photographic series, film essay and experimental writing made in response to visits to the site of the Large Hadron Collider, at CERN in Meyrin, Geneva in 2017 (The European Laboratory for Particle Physics). The folio offers poetic, conceptual and philosophical approaches to subatomic/high energy physics research within the Atlas experiment collision detector on the ground visitor site. This highly poetic folio integrates on-going thematic interests aligned with...

  15. Hemophilia Management via Data Collection and Reporting: Initial Findings from the Comprehensive Care Sustainability Collaborative.

    Science.gov (United States)

    Tarantino, Michael D; Pindolia, Vanita K

    2017-01-01

    Despite being a rare disorder, hemophilia represents a significant driver of health care resource utilization and requires expert hematologic and multidisciplinary services to achieve optimal outcomes. Since their inception nearly 40 years ago, hemophilia treatment centers (HTCs) have served as centers of excellence in providing the intensive care and ancillary services necessary for this unique patient base; however, the full capabilities of these centers may be underused in the current framework of managed care, largely because of a lack of communication and information shared between payers and HTC stakeholders. In an effort to enact tangible change toward improving the quality of care for bleeding disorders, the National Hemophilia Foundation developed an ongoing initiative among 18 leading clinicians and managed care decision makers called the Comprehensive Care Sustainability Collaborative (CCSC). The primary aim of the CCSC is to develop a framework for quality improvement pilot programs that can be replicated across the United States between payers and HTCs to facilitate cost-effective hemophilia management by integrating the HTC comprehensive care model. After CCSC committee members shared perspectives on care delivery, quality, and value, actionable data points were reviewed at length in order to develop meaningful metrics to facilitate information sharing between HTC and payer stakeholders. The following pragmatic measures will be reported by HTCs and payers via a series of pilot programs (reporting group is indicated in brackets): (a) patient classification by diagnosis (type, severity, and inhibitor status) [HTC]; (b) total cost of clotting factor [payer]; (c) prescribed factor dose/dispensed dose/patient weight (± range) [payer and HTC]; (d) emergency department visits/hospitalizations [payer and HTC]; (e) home infusion of clotting factor (%) [HTC]; (f) total cost per patient [payer]; and (g) patient contacts (e.g., clinic visits, follow

  16. Development of orphan vaccines: an industry perspective.

    Science.gov (United States)

    Lang, J; Wood, S C

    1999-01-01

    The development of vaccines against rare emerging infectious diseases is hampered by many disincentives. In the face of growing in-house expenditures associated with research and development projects in a complex legal and regulatory environment, most pharmaceutical companies prioritize their projects and streamline their product portfolio. Nevertheless, for humanitarian reasons, there is a need to develop niche vaccines for rare diseases not preventable or curable by other means. The U.S. Orphan Drug Act of 1983 and a similar proposal from the European Commission (currently under legislative approval) provide financial and practical incentives for the research and development of drugs to treat rare diseases. In addition, updated epidemiologic information from experts in the field of emerging diseases; increased disease awareness among health professionals, patients, and the general public; a list of priority vaccines; emergence of a dedicated organization with strong leadership; and the long-term pharmacoeconomic viability of orphan products will be key factors in overcoming the complexity of orphan status and the limited need for vaccine.

  17. Sustainable HIV Treatment in Africa through Viral Load-Informed Differentiated Care

    Science.gov (United States)

    Phillips, Andrew; Shroufi, Amir; Vojnov, Lara; Cohn, Jennifer; Roberts, Teri; Ellman, Tom; Bonner, Kimberly; Rousseau, Christine; Garnett, Geoff; Cambiano, Valentina; Nakagawa, Fumiyo; Ford, Deborah; Bansi-Matharu, Loveleen; Miners, Alec; Lundgren, Jens; Eaton, Jeff; Parkes-Ratanshi, Rosalind; Katz, Zachary; Maman, David; Ford, Nathan; Vitoria, Marco; Doherty, Meg; Dowdy, David; Nichols, Brooke; Murtagh, Maurine; Wareham, Meghan; Palamountain, Kara; Musanhu, Christine Chiedza; Stevens, Wendy; Katzenstein, David; Ciaranello, Andrea; Barnabas, Ruanne; Braithwaite, Scott; Bendavid, Eran; Nathoo, Kusum J; van de Vijver, David; Wilson, David; Holmes, Charles; Bershteyn, Anna; Walker, Simon; Raizes, Elliot; Jani, Ilesh; Nelson, Lisa; Peeling, Rosanna; Terris-Prestholt, Fern; Murungu, Joseph; Mutasa-Apollo, Tsitsi; Hallett, Timothy; Revill, Paul

    2016-01-01

    There are inefficiencies in current approaches to monitoring patients on antiretroviral therapy (ART) in sub-Saharan Africa. Patients typically attend clinics every 1–3 months for clinical assessment, with clinic costs being comparable with costs of drugs themselves, CD4 counts are measured every 6 months, yet patients are rarely switched to second-line therapies. To ensure sustainability of treatment programmes a transition to more cost-effective ART deliver is needed. In contrast to the CD4 count, measurement of the level of HIV RNA in plasma (“viral load”) provides a direct measure of current treatment effect. Viral load informed differentiated care is a means of tailoring care whereby those with suppressed viral load have less frequent clinical visits and attention is paid to those with unsuppressed viral load to promote adherence and timely switching to a second-line regimen. The most feasible approach in many countries to measure viral load is by collecting dried blood spot (DBS) samples for testing in regional laboratories, although there have been concerns over the sensitivity/specificity of DBS to define treatment failure and the delay in receiving results. We use modelling to synthesize available evidence and evaluate the cost-effectiveness of viral load-informed differentiated care, account for limitations of DBS. We find that viral load-informed differentiated care using DBS is expected to be cost-effective and is recommended as the strategy for patient monitoring, although further empirical evidence as the approach is rolled out would be of value. We also explore the potential benefits of future availability of point-of-care (POC) viral load tests. PMID:26633768

  18. Towards a new welfare state: the social sustainability principle and health care strategies.

    Science.gov (United States)

    Garcés, Jorge; Ródenas, Francisco; Sanjosé, Vicente

    2003-09-01

    In this paper we propose a social and health care model that offers alternatives to three problems arising in converging European welfare states, particularly in the southern nations: the rise in demand for services and features linked to the ageing process, the increase in dependency and the crisis of informal support. Development of the principles of social sustainability implies re-formulation of the regulatory, care, economic, administrative, cultural, and axiological framework enabling a response to the needs of long term care without compromising the welfare of future generations. Together with this principle, quality of life elevated to a subjective right directs attention towards the sphere closest to citizens, eliminating all barriers, which hamper exercise of this right. All of the above produces economic and social costs which must be accepted from a viewpoint of social co-responsibility, which brings with it the supply of welfare individually, without detriment to the exercise of state responsibility in guaranteeing a social protection system of a universal nature.

  19. [Towards a sustainable, cost-effective mental health care; a policy perspective].

    Science.gov (United States)

    Jeurissen, P P T; Ravesteijn, B A; Janssen, R T J M; Tanke, M A C

    After a decade of robust growth in spending, Dutch mental healthcare is on a more stricter budgetary path since 2012. High prevalence of illness and limited spending, imply the need for efficient mental healthcare delivery. AIM: To advise how mental health care can be managed more efficiently. There will also have to be more differentiation between mild and serious psychiatric illnesses. METHOD: Review of academic articles and policy studies. RESULTS: With regard to the treatment of fairly common disorders, more attention needs to be given to integrated basic care and e-health. Employers and stakeholders can perhaps play a role in financing some of these services. Severe mental disorders can be handled more often on an integrated ambulatory basis setting than only in a hospital setting, while scaling down inpatient capacity. These steps would represent a major transition and would require spending cuts and a change in the provider 'landscape'. CONCLUSION: Sustainable mental healthcare is inseparably linked to an agenda that provides value for money and it implies a major transition. However, in principle, it should be possible to fit these changes into the current system of governance. More attention needs to be given to coordination between the various domains, and to a reduction in administrative costs. Reimbursement methods should align e-health, collaborative care, case-management and best-practice pathways.

  20. Sustained effects of integrated COPD management on health status and exercise capacity in primary care patients

    Directory of Open Access Journals (Sweden)

    Annemarije L Kruis

    2010-11-01

    > 2. In the Kroonluchter cohort, 56 subjects completed follow-up, were of mean age 69 years, with an FEV1/FVC ratio of 0.59, while their postbronchodilator FEV1 of 65% predicted was somewhat lower than in the total group. 6MWD improved significantly and in a clinically relevant manner up to 93 m at 12 months and was sustained at 83 m over 24 months; this effect occurred faster in patients with MRC dyspnea score > 2. In patients with baseline 6MWD < 400 m the improvement remained >100 m at 24 months.Conclusion: In this study, IDM improved and sustained health status and exercise capacity in primary care COPD patients during two years of follow-up. Improvements in health status are consistently higher in patients with CCQ > 1 at baseline, being strongest in patients with baseline MRC dyspnea score >2. Improvements in exercise capacity remain highest in patients with 6MWD < 400 m at baseline and seem to occur earlier in patients with MRC dyspnea score >2.Keywords: chronic obstructive pulmonary disease, disease management, integrated care, pulmonary rehabilitation, primary care

  1. Association between palliative care and life-sustaining treatments for patients with dementia: A nationwide 5-year cohort study.

    Science.gov (United States)

    Chen, Ping-Jen; Liang, Fu-Wen; Ho, Chung-Han; Cheng, Shao-Yi; Chen, Yi-Chen; Chen, Yu-Han; Chen, Yueh-Chun

    2018-01-01

    The association between palliative care and life-sustaining treatments for patients with dementia is unclear in Asian countries. To analyse the use of palliative care and its association with aggressive treatments based on Taiwanese national data. A matched cohort study was conducted. The association between intervention and outcome was evaluated using conditional logistic regression analyses. The source population comprised 239,633 patients with dementia diagnosed between 2002 and 2013. We selected patients who received palliative care between 2009 and 2013 (the treatment cohort; N = 1996) and assembled a comparative cohort ( N = 3992) through 1:2 matching for confounding factors. After 2009, palliative care was provided to 3928 (1.64%) patients of the dementia population. The odds ratio for undergoing life-sustaining treatments in the treatment cohort versus the comparative cohort was 1 for some treatments (e.g. 1.73 for tube feeding (95% confidence interval: 1.54-1.95)). Palliative care was more consistently associated with fewer life-sustaining treatments for those with cancer. Palliative care is related to reduced life-sustaining treatments for patients with dementia. However, except in the case of tube feeding, which tended to be provided alongside palliative care regardless of cancer status, having cancer possibly had itself a protective effect against the use of life-sustaining treatments. Modifying the eligibility criteria for palliative care in dementia, improving awareness on the terminal nature of dementia and facilitating advance planning for dementia patients may be priorities for health policies.

  2. Do investors value the FDA orphan drug designation?

    National Research Council Canada - National Science Library

    Miller, Kathleen L

    2017-01-01

    .... Specifically, it studies the value that investors place on the orphan drug designation, by investigating how investors react to companies' announcing that their product has received the designation...

  3. A cross-national comparison of orphan drug policies: implications for the U.S. Orphan Drug Act.

    Science.gov (United States)

    Thamer, M; Brennan, N; Semansky, R

    1998-04-01

    Six countries--Canada, France, Japan, Sweden, the United Kingdom, and the United States--were studied to compare public policies affecting the development and marketing of pharmaceuticals for rare diseases (i.e., orphan drugs). Information was obtained from a variety of published and unpublished sources, including interviews with public policy and pharmaceutical experts in each country. This article presents different approaches to encouraging the development of orphan drugs while ensuring access by regulating their prices. Additionally, the article describes access to orphan drugs as promoted by special coverage for population subgroups, disease categories, and/or specific drugs. Not all efforts to increase access to orphan pharmaceuticals have been the result of government action, as illustrated by the proliferation of for-profit organizations that specialize in orphan drugs. The many policy options from other countries identified in this study are especially relevant, given increasing calls for reform of the U.S. Orphan Drug Act.

  4. The Orbit of the Orphan Stream

    Energy Technology Data Exchange (ETDEWEB)

    Newberg, Heidi Jo; Willett, Benjamin A.; Yanny, Brian; Xu, Yan

    2010-01-01

    We use recent SEGUE spectroscopy and SDSS and SEGUE imaging data to measure the sky position, distance, and radial velocities of stars in the tidal debris stream that is commonly referred to as the 'Orphan Stream.' We fit orbital parameters to the data, and find a prograde orbit with an apogalacticon, perigalacticon, and eccentricity of 90 kpc, 16.4 kpc and e = 0.7, respectively. Neither the dwarf galaxy UMa II nor the Complex A gas cloud have velocities consistent with a kinematic association with the Orphan Stream. It is possible that Segue-1 is associated with the Orphan Stream, but no other known Galactic clusters or dwarf galaxies in the Milky Way lie along its orbit. The detected portion of the stream ranges from 19 to 47 kpc from the Sun and is an indicator of the mass interior to these distances. There is a marked increase in the density of Orphan Stream stars near (l, b) = (253{sup o}; 49{sup o}), which could indicate the presence of the progenitor at the edge of the SDSS data. If this is the progenitor, then the detected portion of the Orphan Stream is a leading tidal tail. We find blue horizontal branch (BHB) stars and F turnoff stars associated with the Orphan Stream. The turnoff color is (g-r){sub 0} = 0.22. The BHB stars have a low metallicity of [Fe/H]{sub WBG} = -2.1. The orbit is best fit to a halo potential with a halo plus disk mass of about 2.6 x 10{sup 11} M{sub {circle_dot}}, integrated to 60 kpc from the Galactic center. Our fits are done to orbits rather than full N-body simulations; we show that if N-body simulations are used, the inferred mass of the galaxy would be slightly smaller. Our best fit is found with a logarithmic halo speed of v{sub halo} = 73 {+-} 24 km s{sup -1}, a disk+bulge mass of M(R < 60 kpc) = 1.3 x 10{sup 11} M{sub {circle_dot}}, and a halo mass of M(R < 60 kpc) = 1.4 x 10{sup 11} M{sub {circle_dot}}. However, we can find similar fits to the data that use an NFW halo profile, or that have smaller disk masses

  5. Market reforms in health care and sustainability of the welfare state

    DEFF Research Database (Denmark)

    Diderichsen, Finn

    1995-01-01

    'pressed out' and reduced waiting lists. Increased efficiency however, threatens equity in some specific aspects. Fee-for-service payment means increased production and so far even increased costs. If they are to be met with increased private financing, rather than with present tax financing, it will bring......Reforming health care systems which are predominantly publicly provided and financed has usually been motivated as a way of increasing efficiency even if it seldom is explicit whether it is in the official sense related to individual utility or in the unofficial sense related to health outcomes....... In the case of Sweden the welfare state has been made politically sustainable through a construction where cash benefits and service provision are tailored to satisfy not only the basic needs but even the more discriminating needs of the middle classes. Their loyalty with the taxes is politically crucial...

  6. Convergent innovation for sustainable economic growth and affordable universal health care: innovating the way we innovate.

    Science.gov (United States)

    Dubé, Laurette; Jha, Srivardhini; Faber, Aida; Struben, Jeroen; London, Ted; Mohapatra, Archisman; Drager, Nick; Lannon, Chris; Joshi, P K; McDermott, John

    2014-12-01

    This paper introduces convergent innovation (CI) as a form of meta-innovation-an innovation in the way we innovate. CI integrates human and economic development outcomes, through behavioral and ecosystem transformation at scale, for sustainable prosperity and affordable universal health care within a whole-of-society paradigm. To this end, CI combines technological and social innovation (including organizational, social process, financial, and institutional), with a special focus on the most underserved populations. CI takes a modular approach that convenes around roadmaps for real world change-a portfolio of loosely coupled complementary partners from the business community, civil society, and the public sector. Roadmaps serve as collaborative platforms for focused, achievable, and time-bound projects to provide scalable, sustainable, and resilient solutions to complex challenges, with benefits both to participating partners and to society. In this paper, we first briefly review the literature on technological innovation that sets the foundations of CI and motivates its feasibility. We then describe CI, its building blocks, and enabling conditions for deployment and scaling up, illustrating its operational forms through examples of existing CI-sensitive innovation. © 2014 The New York Academy of Sciences.

  7. Exploring Factors Associated with Educational Outcomes for Orphan and Abandoned Children in India

    OpenAIRE

    Sinha, Aakanksha; Lombe, Margaret; Saltzman, Leia Y.; Whetten, Kathryn; Whetten, Rachel

    2016-01-01

    India has more than 25 million orphan and abandoned children (UNICEF, 2012). The burden of care for these OAC is on caregivers that are often ill equipped to meet their needs due to inadequate assets. Previous studies suggest that in communities with limited resources, OAC residing with non-biological caregivers are more at risk than those fostered by a biological parent. This study explores the association of caregiver and child characteristics with OAC educational outcome in India. The anal...

  8. Excluding Orphan Drugs from the 340B Drug Discount Program: the Impact on 18 Critical Access Hospitals

    Directory of Open Access Journals (Sweden)

    Madeline Carpinelli Wallack

    2012-01-01

    Full Text Available Purpose: The 340B Drug Pricing Program is a federal program designed to reduce the amount that safety net providers spend on outpatient drugs. The Patient Protection and Affordable Health Care Act of 2010 extended eligibility for 340B to critical access hospitals (CAHs for all drugs except those designated as “orphan.” Because this policy is unprecedented, this study quantifies the gross financial impact that this exemption has on a group of CAHs. Methods: Drug spending for 2010 from 18 CAHs in Minnesota and Wisconsin are reviewed to identify the prevalence of orphan drug purchases and to calculate the price differentials between the 340B price and the hospitals’ current cost. Results: The 18 CAHs’ purchases of orphan drugs comprise an average of 44% of the total annual drug budgets, but only 5% of units purchased, thus representing a very high proportion of their expenditures. In the aggregate, the 18 hospitals would have saved $3.1 million ($171,000 average per hospital had purchases of drugs with orphan designations been made at the 340B price. Because CAH claims for Medicare are reimbursed on a cost-basis, the Federal government is losing an opportunity for savings. Conclusion: The high prevalence of orphan drug use and considerable potential for cost reduction through the 340B program demonstrate the loss of benefit to the hospitals, Federal government and the states.

  9. Trends In Orphan New Molecular Entities, 1983-2014: Half Were First In Class, And Rare Cancers Were The Most Frequent Target.

    Science.gov (United States)

    Miller, Kathleen L; Lanthier, Michael

    2016-03-01

    The Orphan Drug Act was enacted in 1983 to stimulate drug development for rare diseases. How well this law has accomplished that goal is an important public health question. This study examined the characteristics of the 209 orphan drugs approved as new molecular entities in the period 1983-2014. As a whole, these drugs were highly innovative and provided substantial gains in reducing unmet medical needs for rare diseases: Over 50 percent of the drugs were first in class, and 78 percent received a priority review. Drugs approved as either therapeutic or supportive therapies for rare cancers represented the highest proportion of these drugs (35 percent). Additionally, in 2010-14 large companies became a strong presence in developing orphan new molecular entities for oncology indications. Overall, new orphan drugs appeared to be highly innovative and provided important advances in care for patients with rare diseases. Project HOPE—The People-to-People Health Foundation, Inc.

  10. The US orphan drug programme 1983-1995.

    Science.gov (United States)

    Shulman, S R; Manocchia, M

    1997-09-01

    The Orphan Drug Act has become a staple of food and drug law in the US. The experience with the US programme continues to serve as a useful reference point as interest in orphan drug incentive programmes expands globally. This article first reviews details of the legislation and orphan drug regulations, and then provides a 13-year overview (1983-1995) of orphan drug activity in the US, including descriptive data on the designated and approved orphan drugs, their indications and sponsors. In light of a recent challenge to the Food and Drug Administration's (FDA's) authority under the Act, we also examine the interplay between the exclusivity provision of the Act and the orphan drug regulations that define when 2 drugs will be considered the 'same' for the purposes of the Act. A recent court decision affirming the FDA's interpretation of the clinical superiority provisions of the regulations suggests that orphan exclusivity may be less predictable and less certain than it has been in the past. Finally, we consider the usefulness to orphan drug sponsors of other initiatives such as FDA's early access and fast-track approval programmes, and the extent to which the FDA's discretion to waive, defer and reduce prescription drug user fees has worked to the benefit of orphan drug sponsors. Over the 13-year analysis period, the FDA granted 631 orphan designations involving 450 different drugs, for which 121 FDA marketing approvals have been granted. Those with both treatment investigational drug designation and fast-track approval status appeared to benefit substantially from shorter development times. The indications targeted by the orphan drugs fall into 8 categories, with 40% of all orphan indications involving cancer and genetic diseases. Evident in the latter part of the analysis period is the increasing share of orphan activity attributable to biotechnology firms. Even though the Prescription Drug User Fee Act of 1992 did not recognise orphan status for the purpose of

  11. A Mixed-Method Application of the Program Sustainability Assessment Tool to Evaluate the Sustainability of 4 Pediatric Asthma Care Coordination Programs.

    Science.gov (United States)

    Stoll, Shelley; Janevic, Mary; Lara, Marielena; Ramos-Valencia, Gilberto; Stephens, Tyra Bryant; Persky, Victoria; Uyeda, Kimberly; Ohadike, Yvonne; Malveaux, Floyd

    2015-12-03

    As part of a cross-site evaluation of the implementation of an evidence-based intervention for pediatric asthma care coordination into low-income communities, we sought to understand the factors that influenced the programs' expected sustainability of the programs after external funding ended. We administered the Center for Public Health Systems Science's Program Sustainability Assessment Tool, a 40-item instrument assessing 8 domains of sustainability capacity, to 12 key informants across 4 program sites. We developed open-ended probes for each domain. We examined patterns in site-specific and overall domain scores, and coded qualitative data to identify challenges and strategies in each domain. Across sites, the domains of program evaluation (cross-site mean, 5.4 on a scale of 1-7) and program adaptation (mean, 5.2) had the highest ratings (indicating a strong finding during program evaluation) and funding stability had the lowest rating (mean, 2.7). Scores varied most across sites in the domains of strategic planning (SD, 0.9) and funding stability (SD, 0.9). Qualitative data revealed key challenges, including how implementation difficulties and externally led implementation can impede planning for sustainability. Program leaders discussed multiple strategies for enhancing capacity within each domain, including capitalizing on the interconnectedness of all domains, such as using evaluation and communication strategies to bolster internal political support throughout the implementation process. Findings indicating weak and strong domains were consistent with previous findings of studies that used the Program Sustainability Assessment Tool. The addition of qualitative probes yielded detailed data describing capacity strengths, weaknesses, and strategies to increase the likelihood that programs are sustained.

  12. Factors Associated with Substance Use among Orphaned and Non-Orphaned Youth in South Africa

    Science.gov (United States)

    Meghdadpour, Susanne; Curtis, Sian; Pettifor, Audrey; MacPhail, Catherine

    2012-01-01

    Substance use is increasing among youth in South Africa, and may be contributing to transmission of HIV. As parental death often leaves youth with altered emotional and physical resources, substance use may be greater among orphaned adolescents. Utilizing data from a household survey of 15-24 year old South Africans (n = 11,904), multivariable…

  13. The Orphan Drug Act and the Federal Government's Orphan Products Development Program.

    OpenAIRE

    Finkel, M J

    1984-01-01

    Through the combined efforts of agencies and organizations in the public and private sector, drugs have been made available that would not have been at hand without a specific focus on the orphan drug issue. It is anticipated that these cooperative efforts will continue beyond the first enthusiastic burst engendered by the inception of new and interesting activities.

  14. The Orphan Problem in Selected African Countries | Lalthapersad ...

    African Journals Online (AJOL)

    becoming more widespread in response to the emerging orphan crisis. Orphans themselves are in a diffi cult position, having to contend with conditions that are fi nancially, socially and emotionally dislocating, and experiencing hunger, homelessness, forced migration, limited or no access to healthcare and social services, ...

  15. Clinical Perspective Africa's orphan crisis — is it the teacher's ...

    African Journals Online (AJOL)

    The fact that almost 15% of children in 11 of the 43 countries in sub-Saharan Africa are orphans is daunting indeed. This reality of large numbers of orphans should be one of sub-Saharan Africa's greatest concerns. It is not only the emotional impact of the pandemic that is at stake, but also the social and economic fabric of ...

  16. Health and Behavioural Problems Of Children Orphaned By AIDS ...

    African Journals Online (AJOL)

    Background Existing literatures in the West and Sub- Saharan Africa have suggested that children orphaned by AIDS are vulnerable to health and behaviour problems. ... caregivers of orphans were often poorly educated and significantly more likely to report negative life events and increased mental health problems.

  17. World and experiences of AIDS orphans in north central Namibia

    NARCIS (Netherlands)

    Brug, van der M.

    2007-01-01

    How do young AIDS orphans deal with the loss of their parents and their changed circumstances? This thesis discusses the social environment, experiences and perceptions of fourteen orphans in north central Namibia. The author followed the children for five months from September 2003 until March

  18. Predicting the social consequences of orphan hood in South Africa ...

    African Journals Online (AJOL)

    African Journal of AIDS Research ... 2 These orphans will become children who do not live in appropriate social environments to equip them for adult citizenship. 3 Poor socialisation will mean that children orphaned by AIDS will not live within society's moral codes (becoming, for example, street children or juvenile ...

  19. Vulnerability to HIV infection among Luo female adolescent orphans ...

    African Journals Online (AJOL)

    Large-scale surveys have reported that about 55% of orphans worldwide are adolescents. In Kenya, the majority of HIV-infected adolescents are females. The current study used the anthropological methods of in-depth case studies to analyse how migratory life situations of individual female adolescent orphans in the Luo ...

  20. Construction of a parent-derived questionnaire to measure end-of-life care after withdrawal of life-sustaining treatment in the neonatal intensive care unit.

    Science.gov (United States)

    Williams, Constance; Cairnie, Janice; Fines, Valerie; Patey, Colleen; Schwarzer, Karla; Aylward, Jennifer; Lohfeld, Lynne; Kirpalani, Haresh

    2009-01-01

    The objective of this study was to develop and pretest a questionnaire to assess the practice of withdrawal of life-sustaining treatment in the NICU on the basis of the experiences of bereaved parents. We conducted semistructured interviews with 11 parents whose infants had undergone withdrawal of life-sustaining treatment in the NICU at McMaster University Medical Centre to obtain their views on helpful practices. Interviews continued until no new items were obtained (ie, saturation point). A total of 370 items were distilled into 82 questionnaire statements on care by a multidisciplinary team and grouped for analysis into 6 domains: communication, quality of care, quality of life, shared decision-making, withdrawal of life-sustaining treatment process, and bereavement care. Respondents were asked to rank how frequently events occurred on a 7-point Likert scale anchored from 1 = never to 7 = always. A score of >5 was considered favorable. The questionnaire was distributed to a pretest sample of perinatal social workers who attended a bereavement workshop at an international conference. The response rate was 48%. Respondents ranked items that pertained to the withdrawal of life-sustaining treatment process highest, indicating that items were done well. Items related to quality of care and bereavement care ranked lowest. Other domains ranked as follows: communication, shared decision-making, and quality of life. Consistency of items within domains was tested by Cronbach's alpha and split-half testing and were >0.6 for most domains. Parents' views on important aspects of end-of-life care in the NICU were incorporated into a quality assurance questionnaire. Pretesting assessed the performance of the instrument and the perceptions of social workers on the effectiveness of end-of-life practices. Respondents identified that parents' practical needs were met during the withdrawal process but were not consistently met in regard to the quality of in-hospital and follow

  1. Psychosocial disadvantage: preparation, grieving, remembrance and recovery for orphans in eastern Zimbabwe.

    Science.gov (United States)

    Howard, Brian; Matinhure, Nelia; McCurdy, Sheryl A; Johnson, Cary Alan

    2006-05-01

    Few programmes for sub-Saharan Africa's 12.3 million children orphaned by AIDS have focused on their high risk for psychosocial problems. As groundwork for supporting orphans' healthy development, this study describes the preparation, grief, and memorial experiences and the physical and psychosocial well-being of 144 double orphans and 109 single orphans in rural eastern Zimbabwe. Most received no preparation or orphan-specific support for mourning and emotional recovery. On measures of physical and psychosocial well-being, orphans did more poorly than 87 non-orphaned classmates, perhaps reflecting the combined interaction of economic disadvantage and orphan status. Financial hardship was most severe among single orphans. Double orphans' responses suggested perceptions of isolation, lack of support and personal difference. Distress was greatest among younger orphans (health to child and societal development, scaled-up financial assistance should incorporate programmes to help children prepare for and recover from the loss of their parents.

  2. Orphans of the HIV epidemic: the challenges from toddlerhood to adolescence and beyond.

    Science.gov (United States)

    Lala, Mamatha M

    2014-01-01

    This presentation focuses on the challenges and practical issues faced each day by orphans of the HIV epidemic and the holistic care that can be provided, as they continue to grow from toddlerhood to adolescence and beyond. An HIV Research Trust Scholarship enabled me to spend quality time in a sub-Saharan African province worst hit by the HIV epidemic and to interact with local experts and learn from mutual clinical experience. It was an immensely useful exercise as the clinical spectra of the diseases are very similar to ours and they have ongoing active research programs very relevant to our setting. India is arguably home to the largest number of orphans of the HIV epidemic. The responsibility of caring for orphaned children overwhelms and pushes many extended families beyond their ability to cope. Many countries are experiencing large increases in the number of families headed by women and grandparents, or even young children. These households are often unable to meet basic needs, and so the number of children living on the streets is rising. Orphaned children are disadvantaged in many devastating ways. In addition to the trauma of witnessing the sickness and death of one or both parents and perhaps siblings, they lack the necessary parental guidance through crucial life-stages of identity formation and transition into adulthood. They are more likely to suffer damage to their cognitive and emotional development and be subjected to; exploitation in terms of labour, social exclusion, extreme economic uncertainty, physical and sexual abuse, illiteracy, malnutrition and illness. Education remains a distant dream. With stigma and discrimination, they lack legal protection, lose inheritance rights, access to essential services available to other community members and professional help from doctors, teachers and lawyers. The implications for these unfortunate children are extraordinarily grave but governments, international agencies, non-governmental organizations

  3. Orphans of the HIV epidemic: the challenges from toddlerhood to adolescence and beyond

    Directory of Open Access Journals (Sweden)

    Mamatha M Lala

    2014-11-01

    Full Text Available This presentation focuses on the challenges and practical issues faced each day by orphans of the HIV epidemic and the holistic care that can be provided, as they continue to grow from toddlerhood to adolescence and beyond. An HIV Research Trust Scholarship enabled me to spend quality time in a sub-Saharan African province worst hit by the HIV epidemic and to interact with local experts and learn from mutual clinical experience. It was an immensely useful exercise as the clinical spectra of the diseases are very similar to ours and they have ongoing active research programs very relevant to our setting. India is arguably home to the largest number of orphans of the HIV epidemic. The responsibility of caring for orphaned children overwhelms and pushes many extended families beyond their ability to cope. Many countries are experiencing large increases in the number of families headed by women and grandparents, or even young children. These households are often unable to meet basic needs, and so the number of children living on the streets is rising. Orphaned children are disadvantaged in many devastating ways. In addition to the trauma of witnessing the sickness and death of one or both parents and perhaps siblings, they lack the necessary parental guidance through crucial life-stages of identity formation and transition into adulthood. They are more likely to suffer damage to their cognitive and emotional development and be subjected to; exploitation in terms of labour, social exclusion, extreme economic uncertainty, physical and sexual abuse, illiteracy, malnutrition and illness. Education remains a distant dream. With stigma and discrimination, they lack legal protection, lose inheritance rights, access to essential services available to other community members and professional help from doctors, teachers and lawyers. The implications for these unfortunate children are extraordinarily grave but governments, international agencies, non

  4. The Use of Social Media in Orphan Drug Development.

    Science.gov (United States)

    Milne, Christopher-Paul; Ni, Wendi

    2017-11-01

    Social media has transformed how people interact with one another through the Internet, and it has the potential to do the same for orphan drug development. Currently, social media influences the orphan drug development process in the following three ways: assisting the study of orphan diseases, increasing the awareness of orphan disease, and playing a vital role in clinical trials. However, there are some caveats to the utilization of social media, such as the need to protect patient privacy by adequately de-identifying personal health information, assuring consistent quality and representativeness of the data, and preventing the unblinding of patient group assignments. Social media has both potential for improving orphan drug development and pitfalls, but with proper oversight on the part of companies, support and participation of patients and their advocacy groups, and timely guidance from regulatory authorities, the positives outweigh the negatives for this powerful and patient-centric tool. Copyright © 2017 Elsevier HS Journals, Inc. All rights reserved.

  5. The Orphan Drug Act: Restoring the Mission to Rare Diseases.

    Science.gov (United States)

    Daniel, Michael G; Pawlik, Timothy M; Fader, Amanda N; Esnaola, Nestor F; Makary, Martin A

    2016-04-01

    The Orphan Drug Act has fostered drug development for patients with rare cancers and other diseases; however, current data suggest that companies are gaming the system to use the law for mainstream drugs. We identify a pattern of pharmaceutical companies submitting drugs to the Food and Drug Administration (FDA) as orphan drugs but once approved, the drugs are used broadly off-label with the lucrative orphan drug protections and exclusivity benefits. Since the law was passed, the proportion of new FDA-approved drugs that were submitted as orphan drugs has increased with a peak last year of 41% of all FDA-approved drugs approved as orphan drugs. On the basis of the current data, we suggest that patients with rare cancers and other diseases may suffer due to dilution of the incentives and benefits. We propose reform to increase submission scrutiny, decrease benefits based on off-label use, and increase price transparency.

  6. Do investors value the FDA orphan drug designation?

    Science.gov (United States)

    Miller, Kathleen L

    2017-06-19

    The Orphan Drug Act is an important piece of legislation that uses financial incentives to encourage the development of drugs that treat rare diseases. This analysis studies the effects of a portion of the Orphan Drug Act, the orphan drug designation. Specifically, it studies the value that investors place on the orphan drug designation, by investigating how investors react to companies' announcing that their product has received the designation. The results, on average, show that the stock price of a company increases by 3.36% after the announcement of the designation, increasing the value of the company. The results are more pronounced for oncology drugs, and drugs being developed by the smallest companies. The orphan designation appears to be successful at generating positive value for companies, as seen by the positive and significant average increases in stock price.

  7. Teachers’ Pastoral Role in Response to the Needs of Orphaned Learners

    Directory of Open Access Journals (Sweden)

    Teresa Auma Ogina

    2010-12-01

    Full Text Available This article discusses a study that explored the way teachers perceive and describe their roles in responding to the needs of orphaned learners. The participants in the study comprised three secondary and two primary school teachers. The data on the teachers’ experiences were collected through semi-structured interviews, and the findings revealed that, although some of the teachers attempted to fulfill some of the orphaned learners’ needs, most were unable to cope with the combined roles of teaching and learning and care giving. The study identified a lack of material, social, and emotional support for grieving learners. The findings indicate that there is a need for teacher development in terms of preparing teachers to provide pastoral care for orphaned learners. For the teachers’ efforts to be more fruitful, there is also an urgent need for supportive school leadership. In addition, the study highlights the need for counsellors and social workers to be appointed to work in collaboration with the teachers in providing for the needs of the learners.

  8. Widows' and orphans' property disputes: the impact of AIDS in Rakai District, Uganda.

    Science.gov (United States)

    Roys, C

    1995-11-01

    The 1991 census identified 44,000 orphans in the Rakai District of Uganda. The Child Social Care Project (CSCP) in the district helps ensure that orphaned children under 18 years who have lost one or both parents to AIDS receive the property rights to which they are entitled. The property rights of widows are also championed by the CSCP. The project has enjoyed considerable success in settling individual disputes. The CSCP has also had some success in enabling communities to deal appropriately with the conflicts without recourse to experts. The author notes that while it is important to promote the empowerment of women, the phrase is so overused that it is in danger of becoming meaningless. That said, a vital aspect of empowerment is economic independence. The CSCP helps women claim the right to own property, land, and housing, as well as to care for their children in the attempt to give them some degree of economic control over their destiny and that of their children. The paper discusses widows' and orphans' property disputes in sections on wills, customary law, and statutory law. The CSCP is described followed by a case study and consideration of gender and legal reform.

  9. The use of drawings to facilitate interviews with orphaned children in Mpumalanga province, South Africa

    Directory of Open Access Journals (Sweden)

    Teresa A Ogina

    2012-01-01

    Full Text Available HIV/AIDS and being orphaned impact greatly on children's lives. This article explores the life experiences of orphaned children in Mpumalanga province, South Africa. In this qualitative case study, draw-write techniques andface-to-face interviews were used to generate data related to the experiences of the children. Results suggest that although the interviewed children yearn for their parents and experience unmet emotional and material needs, they use promotive factors, such as personal agency and environmental relationships, as resilience in fulfilling their needs. Furthermore, the results suggest relationships based on values, such as caring, respect and mutual understanding, as protective factors that may contribute to the fulfilment of social needs as well as enabling their emotional well-being.

  10. More than the loss of a parent: potentially traumatic events among orphaned and abandoned children.

    Science.gov (United States)

    Whetten, Kathryn; Ostermann, Jan; Whetten, Rachel; O'Donnell, Karen; Thielman, Nathan

    2011-04-01

    This study examines rates of potentially traumatic events and associated anxiety and emotional/behavioral difficulties among 1,258 orphaned and abandoned children in 5 low- and middle-income countries. The study quantifies the types of events the children experienced and demonstrates that anxiety and emotional/behavioral difficulties increase with additional exposure. As policies for orphaned and abandoned children are being implemented, this study helps policy makers and care providers recognize that (a) children and caregivers are willing to report experiences of potentially traumatic events, (b) those who report such events are at higher risk for experiencing additional events, (c) resulting symptomatology indicates a need for appropriate mental health services, and (d) boys are as vulnerable as girls, indicating an equal need for protection. Copyright © 2011 International Society for Traumatic Stress Studies.

  11. Family Contexts and Schooling Disruption among Orphans in Post-Genocide Rwanda.

    Science.gov (United States)

    Thomas, Kevin J A

    2010-12-01

    This study examines the relationship between orphan status and schooling disruption in post-genocide Rwanda. The results indicate that while non-orphans have more favorable schooling outcomes in two-parent than in single-parent families, the reverse is true among Rwandan orphans. In single-mother households, paternal orphans, i.e. orphans with only a living mother, have better outcomes than their orphan and non-orphan counterparts. In contrast, paternal orphans have worse outcomes than other children in two-parent households, especially in households headed by males. Maternal orphans are more likely to experience schooling disruptions than non-orphans regardless of family structure. The maternal-orphan disadvantage is nevertheless greater in female-headed than in male-headed households. As expected, non-related orphans are more disadvantaged than orphans related to their household heads. However, non-related orphans have a greater disadvantage in two-parent than in single-parent households. The results also suggest that within households, the provision of childcare to children below schooling age is an impediment to orphan's schooling. These impediments are, however, greater for double-orphans than paternal or maternal orphans.

  12. Tracking the route to sustainability: a service evaluation tool for an advance care planning model developed for community palliative care services.

    Science.gov (United States)

    Blackford, Jeanine; Street, Annette

    2012-08-01

    The study aim was to develop a service evaluation tool for an advance care planning model implemented in community palliative care. Internationally, advance care planning programmes usually measure success by completion rate of advance directives or plans. This outcome measure provides little information to assist nurse managers to embed advance care planning into usual care and measure their performance and quality over time. An evaluation tool was developed to address this need in Australian community palliative care services. Multisite action research approach. Three community palliative care services located in Victoria, Australia, participated. Qualitative and quantitative data collection strategies were used to develop the Advance Care Planning-Service Evaluation Tool. The Advance Care Planning-Service Evaluation Tool identified advance care planning progress over time across three stages of Establishment, Consolidation and Sustainability within previously established Model domains of governance, documentation, practice, education, quality improvement and community engagement. The tool was used by nurses either as a peer-assessment or self-assessment tool that assisted services to track their implementation progress as well as plan further change strategies. The Advance Care Planning-Service Evaluation Tool was useful to nurse managers in community palliative care. It provided a clear outline of service progress, level of achievement and provided clear direction for planning future changes. The Advance Care Planning-Service Evaluation Tool enables nurses in community palliative care to monitor, evaluate and plan quality improvement of their advance care planning model to improve end-of-life care. As the tool describes generic healthcare processes, there is potential transferability of the tool to other types of services. © 2012 Blackwell Publishing Ltd.

  13. Creating and sustainable development of specialized centers as a way to improve quality of medical care

    Directory of Open Access Journals (Sweden)

    V. I. Guzeva

    2016-01-01

    Full Text Available Quality of care is evaluated on the completeness of the survey, the correct diagnosis, treatment efficacy, and its duration. Improving the quality and efficiency of medical care for children with paroxysmal disorders of consciousness is one of topical problems of neurology.Aim. The aim of the work is to justify the relationship between improving the quality of health care and sustainable development in the modern conditions of specialized medical centers on the example of the work on the identification and treatment of children with paroxysmal disorders of consciousness of the Center for diagnosis and treatment of epilepsy, and sleep disorders in children and adolescents at the department neurology, neurosurgery and medical genetics SPbGPMU.Materials and methods. For more accurate diagnosis and treatment at the Center conducted a comprehensive examination, including video-EEG оf 527 children aged 1 month to 18 years. A clinical trial study included medical cases, assessment of neurological and somatic status, the study of seizure types and forms of the disease. Instrumental methods of examination were determined by EEG and MRI studies of the brain.Main results. Comprehensive survey of sick children with monitoring video-EEG revealed that 317 children (60,1% had epileptic paroxysms and 210 children (39,8% – non-epileptic paroxysms. Correction treatment was performed in 284 (89,5% children with epileptic paroxysms and altered the treatment in 190 (90,4% children with epileptic paroxysms.Conclusion. The presented clinical data show the high effectiveness of the Centre in the diagnosis and treatment of children with paroxysmal disorders of consciousness. The accumulated experience in the Center confirms the relevance of the creation of the structure of scientific and educational institutions specialized centers in which patients will be given to high-quality medical care.

  14. Market reforms in health care and sustainability of the welfare state: lessons from Sweden.

    Science.gov (United States)

    Diderichsen, F

    1995-01-01

    Reforming health care systems which are predominantly publicly provided and financed has usually been motivated as a way of increasing efficiency even if it seldom is explicit whether it is in the official sense related to individual utility or in the unofficial sense related to health outcomes. In the case of Sweden the welfare state has been made politically sustainable through a construction where cash benefits and service provision are tailored to satisfy not only the basic needs but even the more discriminating needs of the middle classes. Their loyalty with the taxes is politically crucial and therefore their evaluation of the services in the welfarist sense equally important. That loyalty was however threatened in a situation where cost-containment policies were applied while equity principles were still a strong priority. Health care utilization was increasing among the very old and chronically ill while it was decreasing for other groups. The reforms introduced in some counties during the 1990s have been focussing on a purchaser-provider split and fee-for-service payment of providers. They have increased productivity sharply, increased utilization even among the groups that previously were 'pressed out' and reduced waiting lists. Increased efficiency however, threatens equity in some specific aspects. Fee-for-service payment means increased production and so far even increased costs. If they are to be met with increased private financing, rather than with present tax financing, it will bring the risk of inequities. Payment of hospitals through DRG systems means payment to providers for medical interventions with no incentives to deal with social consequences of illness. Inequities in health care can be related to the way health care deals with inequalities in health due to inequalities in living conditions or inequalities in living conditions due to ill health. In the short perspective the reforms may threaten equity in the second aspect, in the longer

  15. Exploring Responses to Transformative Group Therapy for Orphaned Children in the Context of Mass Orphaning in Botswana

    Science.gov (United States)

    Thamuku, Masego; Daniel, Marguerite

    2013-01-01

    In the context of AIDS, the Botswana Government has adopted a group therapy program to help large numbers of orphaned children cope with bereavement. This study explores the effectiveness of the therapy and examines how it interacts with cultural attitudes and practices concerning death. Ten orphaned children were involved in five rounds of data…

  16. Sustainability and scalability of a volunteer-based primary care intervention (Health TAPESTRY): a mixed-methods analysis.

    Science.gov (United States)

    Kastner, Monika; Sayal, Radha; Oliver, Doug; Straus, Sharon E; Dolovich, Lisa

    2017-08-01

    Chronic diseases are a significant public health concern, particularly in older adults. To address the delivery of health care services to optimally meet the needs of older adults with multiple chronic diseases, Health TAPESTRY (Teams Advancing Patient Experience: Strengthening Quality) uses a novel approach that involves patient home visits by trained volunteers to collect and transmit relevant health information using e-health technology to inform appropriate care from an inter-professional healthcare team. Health TAPESTRY was implemented, pilot tested, and evaluated in a randomized controlled trial (analysis underway). Knowledge translation (KT) interventions such as Health TAPESTRY should involve an investigation of their sustainability and scalability determinants to inform further implementation. However, this is seldom considered in research or considered early enough, so the objectives of this study were to assess the sustainability and scalability potential of Health TAPESTRY from the perspective of the team who developed and pilot-tested it. Our objectives were addressed using a sequential mixed-methods approach involving the administration of a validated, sustainability survey developed by the National Health Service (NHS) to all members of the Health TAPESTRY team who were actively involved in the development, implementation and pilot evaluation of the intervention (Phase 1: n = 38). Mean sustainability scores were calculated to identify the best potential for improvement across sustainability factors. Phase 2 was a qualitative study of interviews with purposively selected Health TAPESTRY team members to gain a more in-depth understanding of the factors that influence the sustainability and scalability Health TAPESTRY. Two independent reviewers coded transcribed interviews and completed a multi-step thematic analysis. Outcomes were participant perceptions of the determinants influencing the sustainability and scalability of Health TAPESTRY. Twenty

  17. Animal welfare: an aspect of care, sustainability, and food quality required by the public.

    Science.gov (United States)

    Broom, Donald M

    2010-01-01

    People feel that they have obligations to the animals that they use and show some degree of care behavior toward them. In addition, animal welfare is an aspect of our decisions about whether animal-usage systems are sustainable. A system that results in poor welfare is unsustainable because it is unacceptable to many people. The quality of animal products is now judged in relation to the ethics of production, including impact on the animal's welfare on immediate features and on consequences for consumers. Because genetic selection and management for high productivity may lead to more disease and other aspects of poor welfare, consumers demand some major changes in animal-production systems. In teaching animal welfare, a clear definition that can be related to other concepts such as needs, health, and stress is needed. The methodology for the scientific assessment of animal welfare has developed rapidly in recent years and has become a major scientific discipline. No veterinary degree course should be approved unless a full course on the science of animal welfare and relevant aspects of ethics and law have been taught. Each country should have a national advisory committee on animal-welfare science, made up of independent scientists, including veterinarians, who can write impartial reviews of the state of scientific knowledge.

  18. A program for sustained improvement in preventing ventilator associated pneumonia in an intensive care setting

    Directory of Open Access Journals (Sweden)

    Caserta Raquel A

    2012-09-01

    Full Text Available Abstract Background Ventilator-associated pneumonia (VAP is a common infection in the intensive care unit (ICU and associated with a high mortality. Methods A quasi-experimental study was conducted in a medical-surgical ICU. Multiple interventions to optimize VAP prevention were performed from October 2008 to December 2010. All of these processes, including the Institute for Healthcare Improvement’s (IHI ventilator bundle plus oral decontamination with chlorhexidine and continuous aspiration of subglottic secretions (CASS, were adopted for patients undergoing mechanical ventilation. Results We evaluated a total of 21,984 patient-days, and a total of 6,052 ventilator-days (ventilator utilization rate of 0.27. We found VAP rates of 1.3 and 2.0 per 1,000 ventilator days respectively in 2009 and 2010, achieving zero incidence of VAP several times during 12 months, whenever VAP bundle compliance was over 90%. Conclusion These results suggest that it is possible to reduce VAP rates to near zero and sustain these rates, but it requires a complex process involving multiple performance measures and interventions that must be permanently monitored.

  19. Sustainable Reduction of Sleepiness through Salutogenic Self-Care Procedure in Lunch Breaks: A Pilot Study

    Directory of Open Access Journals (Sweden)

    Sebastian Schnieder

    2013-01-01

    Full Text Available The aim of the study was to elucidate the immediate, intermediate, and anticipatory sleepiness reducing effects of a salutogenic self-care procedure called progressive muscle relaxation (PMR, during lunch breaks. The second exploratory aim deals with determining the onset and long-term time course of sleepiness changes. In order to evaluate the intraday range and interday change of the proposed relaxation effects, 14 call center agents were assigned to either a daily 20-minute self-administered PMR or a small talk (ST group during a period of seven months. Participants’ levels of sleepiness were analyzed in a controlled trial using anticipatory, postlunchtime, and afternoon changes of sleepiness as indicated by continuously determined objective reaction time measures (16,464 measurements and self-reports administered five times per day, once per month (490 measurements. Results indicate that, in comparison to ST, the PMR break (a induces immediate, intermediate, and anticipatory reductions in sleepiness; (b these significant effects remarkably show up after one month, and sleepiness continues to decrease for at least another five months. Although further research is required referring to the specific responsible mediating variables, our results suggest that relaxation based lunch breaks are both accepted by employees and provide a sustainable impact on sleepiness.

  20. Is orphan drug status beneficial to tropical disease control? Comparison of the American and future European orphan drug acts.

    Science.gov (United States)

    Trouiller, P; Battistella, C; Pinel, J; Pecoul, B

    1999-06-01

    OBJECTIVES To quantify past outcomes of tropical pharmacology research and development (R & D) and to assess past benefits of the American orphan drug act and potential benefits of the future European orphan drug regulation on tropical diseases. This paper presents two analyses: a 1983-97 retrospective study of the United States Orphan Drug Act concerning rare diseases and a prospective study of the European Proposal for a Regulation Concerning Orphan Drugs and its possible impact on tropical diseases. Different programmes have in the past tried to stimulate R & D in this area, but results remain limited. Of 1450 new chemical entities marketed between 1972 and 1997, 13 were specifically for tropical diseases and considered as essential drugs. Between 1983 & 1997, the US Orphan Drug Act approved 837 drugs and marketing of 152 new molecular entities (NMEs). Three NMEs have been designated for malaria and human African trypanosomiasis. Seven others, already commonly used in tropical diseases, received either orphan designation or an orphan approval for another indication. Pharmaceutical companies benefit from the US framework only when the US market exclusivity clause was applicable. Future European orphan drug regulation appears to be similar to the US Orphan Drug Act. CONCLUSION The orphan drug programmes relating to rare diseases have met with some success. Considering tropical diseases rare diseases seems inadequate to boost pharmaceutical R & D. However, some provisions of the European text may be relevant to tropical diseases, admitting the need for a more specific rule for evaluations of this kind of drug and recognizing the existence of 'diseases of exception'.

  1. How do small rural primary health care services sustain themselves in a constantly changing health system environment?

    Science.gov (United States)

    Buykx, Penny; Humphreys, John S; Tham, Rachel; Kinsman, Leigh; Wakerman, John; Asaid, Adel; Tuohey, Kathy

    2012-03-26

    The ability to sustain comprehensive primary health care (PHC) services in the face of change is crucial to the health of rural communities. This paper illustrates how one service has proactively managed change to remain sustainable. A 6-year longitudinal evaluation of the Elmore Primary Health Service (EPHS) located in rural Victoria, Australia, is currently underway, examining the performance, quality and sustainability of the service. Threats to, and enablers of, sustainability have been identified from evaluation data (audit of service indicators, community surveys, key stakeholder interviews and focus groups) and our own observations. These are mapped against an overarching framework of service sustainability requirements: workforce organisation and supply; funding; governance, management and leadership; service linkages; and infrastructure. Four years into the evaluation, the evidence indicates EPHS has responded effectively to external and internal changes to ensure viability. The specific steps taken by the service to address risks and capitalise on opportunities are identified. This evaluation highlights lessons for health service providers, policymakers, consumers and researchers about the importance of ongoing monitoring of sentinel service indicators; being attentive to changes that have an impact on sustainability; maintaining community involvement; and succession planning.

  2. 21 CFR 316.27 - Change in ownership of orphan-drug designation.

    Science.gov (United States)

    2010-04-01

    ... resident agent. (b) No sponsor may relieve itself of responsibilities under the Orphan Drug Act or under... 21 Food and Drugs 5 2010-04-01 2010-04-01 false Change in ownership of orphan-drug designation... SERVICES (CONTINUED) DRUGS FOR HUMAN USE ORPHAN DRUGS Designation of an Orphan Drug § 316.27 Change in...

  3. The Fiction of Sustainability

    DEFF Research Database (Denmark)

    Mubanda Rasmussen, Louise

    at maintaining and attracting new donor funding? Despite this contradiction, various actors in the HIV/AIDS field continuously invoke the doctrine of sustainability (Swidler & Watkins) as the remedy for problems such as 'donor dependency' and 'high turn-over' among volunteers. Based on five months ethnographic...... research with organisations providing help to "Orphans and Vulnerable Children" in Malawi, this paper discusses how donors, international and local NGOs, and CBOs all participate in keeping alive 'the fiction of sustainability', each for their different reasons. Rather than overt resistance to the power...

  4. The Orphan Drug Act. The first 7 years.

    Science.gov (United States)

    Asbury, C H

    1991-02-20

    The 1983 Orphan Drug Act sought to increase market incentives and decrease regulatory barriers for products used to treat rare ("orphan") diseases. Major provisions included market exclusivity, tax credits, and regulatory process clarifications. This analysis compares pre- and post-Act industry and government data to examine changes associated with the law. While industry sponsored 34 marketed and 24 experimental orphan drugs in the 17 years prior to the Act, it has sponsored 39 of 42 marketed orphan products in the 7 years since the Act. An additional 301 experimental products have orphan designation. While 25 of 40 marketed orphan products reportedly had annual sales of less than $1 million, product sales for three conditions are more than $100 million annually. This prompted changes in the law, passed by Congress in 1990, but vetoed. Overall, the law has been associated with an increase in orphan product development. The law's costs and benefits to companies, patients, and the public should be examined if future changes are proposed.

  5. Examining the sustainability potential of a multisite pilot to integrate alcohol screening and brief intervention within three primary care systems.

    Science.gov (United States)

    King, D K; Gonzalez, S J; Hartje, J A; Hanson, B L; Edney, C; Snell, H; Zoorob, R J; Roget, N A

    2018-01-23

    The U.S. Preventive Services Task Force recommends that clinicians adopt universal alcohol screening and brief intervention as a routine preventive service for adults, and efforts are underway to support its widespread dissemination. The likelihood that healthcare systems will sustain this change, once implemented, is under-reported in the literature. This article identifies factors that were important to postimplementation sustainability of an evidence-based practice change to address alcohol misuse that was piloted within three diverse primary care organizations. The Centers for Disease Control and Prevention funded three academic teams to pilot and evaluate implementation of alcohol screening and brief intervention within multiclinic healthcare systems in their respective regions. Following the completion of the pilots, teams used the Program Sustainability Assessment Tool to retrospectively describe and compare differences across eight sustainability domains, identify strengths and potential threats to sustainability, and make recommendations for improvement. Health systems varied across all domains, with greatest differences noted for Program Evaluation, Strategic Planning, and Funding Stability. Lack of funding to sustain practice change, or data monitoring to promote fit and fidelity, was an indication of diminished Organizational Capacity in systems that discontinued the service after the pilot. Early assessment of sustainability factors may identify potential threats that could be addressed prior to, or during implementation to enhance Organizational Capacity. Although this study provides a retrospective assessment conducted by external academic teams, it identifies factors that may be relevant for translating evidence-based behavioral interventions in a way that assures that they are sustained within healthcare systems. © The Society of Behavioral Medicine 2018. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

  6. Supply chain management with cost-containment & financial-sustainability in a tertiary care hospital.

    Science.gov (United States)

    Chandra, Hem; Rinkoo, Arvind Vashishta; Verma, Jitendra Kumar; Verma, Shuchita; Kapoor, Rakesh; Sharma, R K

    2013-01-01

    Financial crunch in the present recession results in the non-availability of the right materials at the right time in large hospitals. However due to insufficient impetus towards systems development, situation remains dismal even when funds are galore. Cost incurred on materials account for approximately one-third of the total recurring expenditures in hospitals. Systems development for effective and efficient materials management is thus tantamount to cost-containment and sustainability. This scientific paper describes an innovative model, Hospital Revolving Fund (HRF), developed at a tertiary care research institute in Asia. The main idea behind inception of HRF was to ensure availability of all supplies in the hospital so that the quality of healthcare delivery was not affected. The model was conceptualized in the background of non-availability of consumables in the hospital leading to patient as well as staff dissatisfaction. Hospital supplies have been divided into two parts, approximately 3250 unit items and 1750 miscellaneous items. This division is based on cost, relative-utility and case-specific utilization. 0.1 Million USD, separated from non-planned budget, was initially used as seed money in 1998. HRF procures supplies from reputed firms on concessional rates (8-25%) and make them available to patients at much lesser rates vis-à-vis market rates, levying minimal maintenance charges. In 2009-10, total annual purchases of 14 Million USD were made. The balance sheet reflected 1.4 Million USD as fixed deposit investment. The minimal maintenance charges levied on the patients along with the interest income were sufficient to pay for all recurring expenses related to HRF. Even after these expenses, HRF boosted of 0.2 Million USD as cash-in-hand in financial year 2009-10. In-depth analysis of 'balance sheet' and 'Income and Expenditure' statement of the fund for last five financial years affirms that HRF is a self-sustainable and viable supply chain

  7. UK end-of-life care services in dementia, initiatives and sustainability: results of a national online survey.

    Science.gov (United States)

    Amador, Sarah; Goodman, Claire; Robinson, Louise; Sampson, Elizabeth L

    2016-10-14

    People living and dying with non-cancer diagnoses, including dementia, have poorer access to generalist and specialist palliative care than people with cancer, and experience worse outcomes in terms of pain and symptom control, and quality and experience of care. In the UK, the National Council for Palliative Care (NCPC) ran a national survey of services for end-of-life care for people with dementia (2008) in which 16 services were identified, and reported on case studies and examples of good practice. We updated the NCPC survey to review progress in previously identified services, identify factors that lead to sustainable services and identify new initiatives in this area of care. An online survey was developed and piloted before use. Initiatives were contacted via targeted (N=63) and open call invitations. The survey was made up of 5 sections. Quantitative data were analysed using descriptive statistics. 15 services responded. They engaged in a wide range of activities predominately providing direct care (80%) and workforce development/advisory or educational activities (87%). Results suggest that sustainability of services is reliant on clinicians with a leadership role and wider system support through funding mechanisms and a minimum level of integration within normal service provision. Recent initiatives are largely built on the expertise of the nursing profession (with or without input from medical consultants), and driven mainly by the charity and hospice sector. This has generated a potential new model of care provision in end of life dementia care, 'Hospice-enabled Dementia Care'. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.

  8. Child work and labour among orphaned and abandoned children in five low and middle income countries.

    Science.gov (United States)

    Whetten, Rachel; Messer, Lynne; Ostermann, Jan; Whetten, Kathryn; Pence, Brian Wells; Buckner, Megan; Thielman, Nathan; O'Donnell, Karen

    2011-01-13

    The care and protection of the estimated 143,000,000 orphaned and abandoned children (OAC) worldwide is of great importance to global policy makers and child service providers in low and middle income countries (LMICs), yet little is known about rates of child labour among OAC, what child and caregiver characteristics predict child engagement in work and labour, or when such work infers with schooling. This study examines rates and correlates of child labour among OAC and associations of child labour with schooling in a cohort of OAC in 5 LMICs. The Positive Outcomes for Orphans (POFO) study employed a two-stage random sampling survey methodology to identify 1480 single and double orphans and children abandoned by both parents ages 6-12 living in family settings in five LMICs: Cambodia, Ethiopia, India, Kenya, and Tanzania. Regression models examined child and caregiver associations with: any work versus no work; and with working income were associated with increased child labour. Child labour, but not working fewer than 28 hours per week, was associated with decreased school attendance. One in seven OAC in this study were reported to be engaged in child labour. Policy makers and social service providers need to pay close attention to the demands being placed on female OAC, particularly in rural areas and poor households with limited income sources. Programs to promote OAC school attendance may need to focus on the needs of families as well as the OAC.

  9. Prevalence of Behavioral and Emotional Disorders among the Orphans and Factors Associated with these Disorders

    Directory of Open Access Journals (Sweden)

    Wasima Rahman

    2012-06-01

    Full Text Available Background: Orphans are the special group of children who are generally deprived and prone to develop psychiatric disorders even reared in well run institution. Objectives: To find out the prevalence of the behavioral and emotional disorder among the children living in orphanage in Dhaka city, and to assess the possible factors associated with the presence of disorders among this study population. Methods: It was a cross sectional descriptive study conducted in selected orphanages. A Total 342 cases were included. One stage structured assessment of psychopathology was carried out by using a valid Bangla version of DAWBA (The Development and Well-Being Assessment. Data analysis was done by SPSS for windows 16.0 version. Results: The results indicate that overall prevalence of behavioral and emotional disorders were 40.35%, in which Behavioral disorder was 26.9%, Emotional disorder was 10.2% and both Behavioral and Emotional disorder were 3.2%. Higher length of stay and low level of education of foster mother were significantly associated with psychiatric morbidity of the respondents. Conclusions: It can be concluded that behavioral and emotional disorders are highly prevalent among orphan children and adolescents with residential care that needs to be addressed. Moreover, measure for early identification and intervention will improve the quality of life of the orphan population.DOI: http://dx.doi.org/10.3329/bsmmuj.v5i1.10997 BSMMU J 2012; 5(1:29-34

  10. Physical and sexual abuse in orphaned compared to non-orphaned children in sub-Saharan Africa: a systematic review and meta-analysis.

    Science.gov (United States)

    Nichols, J; Embleton, L; Mwangi, A; Morantz, G; Vreeman, R; Ayaya, S; Ayuku, D; Braitstein, P

    2014-02-01

    This systematic review assessed the quantitative literature to determine whether orphans are more likely to experience physical and/or sexual abuse compared to non-orphans in sub-Saharan Africa (SSA). It also evaluated the quality of evidence and identified research gaps. Our search identified 10 studies, all published after 2005, from Zimbabwe, South Africa, Kenya and Uganda. The studies consisted of a total 17,336 participants (51% female and 58% non-orphans). Of those classified as orphans (n=7,315), 73% were single orphans, and 27% were double orphans. The majority of single orphans were paternal orphans (74%). Quality assessment revealed significant variability in the quality of the studies, although most scored higher for general design than dimensions specific to the domain of orphans and abuse. Combined estimates of data suggested that, compared to non-orphans, orphans are not more likely to experience physical abuse (combined OR=0.96, 95% CI [0.79, 1.16]) or sexual abuse (combined OR=1.25, 95% CI [0.88, 1.78]). These data suggest that orphans are not systematically at higher risk of experiencing physical or sexual abuse compared to non-orphans in sub-Saharan Africa. However, because of inconsistent quality of data and reporting, these findings should be interpreted with caution. Several recommendations are made for improving data quality and reporting consistency on this important issue. Copyright © 2013 Elsevier Ltd. All rights reserved.

  11. Ror receptor tyrosine kinases: orphans no more.

    Science.gov (United States)

    Green, Jennifer L; Kuntz, Steven G; Sternberg, Paul W

    2008-11-01

    Receptor tyrosine kinase-like orphan receptor (Ror) proteins are a conserved family of tyrosine kinase receptors that function in developmental processes including skeletal and neuronal development, cell movement and cell polarity. Although Ror proteins were originally named because the associated ligand and signaling pathway were unknown, recent studies in multiple species have now established that Ror proteins are Wnt receptors. Depending on the cellular context, Ror proteins can either activate or repress transcription of Wnt target genes and can modulate Wnt signaling by sequestering Wnt ligands. New evidence implicates Ror proteins in planar cell polarity, an alternative Wnt pathway. Here, we review the progress made in understanding these mysterious proteins and, in particular, we focus on their function as Wnt receptors.

  12. The old care paradigm is dead, long live the new sustainable care paradigm: how can GP commissioning consortia meet the demand challenges of 21st century healthcare?

    Science.gov (United States)

    Mackenzie, James

    2011-07-01

    There are many challenges facing the health system in the 21st century - the majority of which are related to managing demand for health services. To meet these challenges emerging GP commissioning consortia will need to take a new approach to commissioning health services - an approach that moves beyond the current acute-centred curative paradigm of care to a new sustainable paradigm of care that focuses on primary care, integrated services and upstream prevention to manage demand. A key part of this shift is the recognition that the health system does not operate in a vacuum and that strategic commissioning decisions must take account of wider determinants of health and well-being, and operate within the finite limits of the planet's natural resources. The sustainable development principle of balancing financial, social and environmental considerations is crucial in managing demand for health services and ensuring that the health system is resilient to risks of resource uncertainty and a changing climate. Building sustainability into the governance and contracting processes of GP commissioning consortia will help deliver efficiency savings, impact on system productivity, manage system risk and help manage demand through the health co-benefits of taking a whole systems approach to commissioning decisions. Commissioning services from providers committed to corporate social responsibility and sustainable business practices allows us to move beyond a health system that cures people reactively to one in which the health of individuals and populations is managed proactively through prevention and education. The opportunity to build sustainability principles into the culture of GP commissioning consortia upfront should be seized now to ensure the new model of commissioning endures and is fit for the future.

  13. The International Cancer Expert Corps: A Unique Approach for Sustainable Cancer Care in Low and Lower-Middle Income Countries

    Science.gov (United States)

    Coleman, C. Norman; Formenti, Silvia C.; Williams, Tim R.; Petereit, Daniel G.; Soo, Khee C.; Wong, John; Chao, Nelson; Shulman, Lawrence N.; Grover, Surbhi; Magrath, Ian; Hahn, Stephen; Liu, Fei-Fei; DeWeese, Theodore; Khleif, Samir N.; Steinberg, Michael; Roth, Lawrence; Pistenmaa, David A.; Love, Richard R.; Mohiuddin, Majid; Vikram, Bhadrasain

    2014-01-01

    The growing burden of non-communicable diseases including cancer in low- and lower-middle income countries (LMICs) and in geographic-access limited settings within resource-rich countries requires effective and sustainable solutions. The International Cancer Expert Corps (ICEC) is pioneering a novel global mentorship–partnership model to address workforce capability and capacity within cancer disparities regions built on the requirement for local investment in personnel and infrastructure. Radiation oncology will be a key component given its efficacy for cure even for the advanced stages of disease often encountered and for palliation. The goal for an ICEC Center within these health disparities settings is to develop and retain a high-quality sustainable workforce who can provide the best possible cancer care, conduct research, and become a regional center of excellence. The ICEC Center can also serve as a focal point for economic, social, and healthcare system improvement. ICEC is establishing teams of Experts with expertise to mentor in the broad range of subjects required to establish and sustain cancer care programs. The Hubs are cancer centers or other groups and professional societies in resource-rich settings that will comprise the global infrastructure coordinated by ICEC Central. A transformational tenet of ICEC is that altruistic, human-service activity should be an integral part of a healthcare career. To achieve a critical mass of mentors ICEC is working with three groups: academia, private practice, and senior mentors/retirees. While in-kind support will be important, ICEC seeks support for the career time dedicated to this activity through grants, government support, industry, and philanthropy. Providing care for people with cancer in LMICs has been a recalcitrant problem. The alarming increase in the global burden of cancer in LMICs underscores the urgency and makes this an opportune time fornovel and sustainable solutions to transform cancer care

  14. The International Cancer Expert Corps: a unique approach for sustainable cancer care in low and lower-middle income countries

    Directory of Open Access Journals (Sweden)

    C Norman eColeman

    2014-11-01

    Full Text Available The growing burden of non-communicable diseases including cancer in low- and lower-middle income countries (LMICs and in geographic-access limited settings within resource-rich countries requires effective and sustainable solutions. The International Cancer Expert Corps is pioneering a novel global mentorship-partnership model to address workforce capability and capacity within cancer disparities regions built on the requirement for local investment in personnel and infrastructure. Radiation oncology will be a key component given its efficacy for cure even for the advanced stages of disease often encountered and for palliation. The goal for an ICEC Center within these health disparities settings is to develop and retain a high quality sustainable workforce who can provide the best possible cancer care, conduct research and become a regional center of excellence. The ICEC Center can also serve as a focal point for economic, social and healthcare system improvement. ICEC is establishing teams of Experts with expertise to mentor in the broad range of subjects required to establish and sustain cancer care programs. The Hubs are cancer centers or other groups and professional societies in resource-rich settings that will comprise the global infrastructure coordinated by ICEC Central. A transformational tenet of ICEC is that altruistic, human-service activity should be an integral part of a healthcare career. To achieve a critical mass of mentors ICEC is working with three groups: academia, private practice and senior mentors/retirees. While in-kind support will be important, ICEC seeks support for the career time dedicated to this activity through grants, government support, industry and philanthropy. Providing care for people with cancer in LMICs has been a recalcitrant problem. The alarming increase in the global burden of cancer in LMICs underscores the urgency and makes this an opportune time for novel and sustainable solutions to transform

  15. From novice to expert: agroecological competences of children orphaned by AIDS compared to non-orphans in Benin

    Directory of Open Access Journals (Sweden)

    Price Lisa L

    2011-01-01

    Full Text Available Abstract Background AIDS has created new vulnerabilities for rural African households due to prime-age adult mortality and is assumed to lead to impairment of the intergenerational transfer of farming knowledge. There has been scant research to date, however, on the impacts of parental death on farming knowledge of children made orphans by AIDS. The question we investigate is if there is a difference in agricultural expertise between AIDS affected and non-affected adults and children. Methods The research was carried out in rural Benin with 77 informants randomly selected according to their AIDS status: 13 affected and 13 non-affected adults; 13 paternal, 13 maternal and 13 double orphans; and 12 non-orphan children. Informants descriptions from pile sorting exercises of maize and cowpea pests were categorized and then aggregated into descriptions based form (morphology and function (utility and used to determine whether the moving from novice to expert is impaired by children orphaned by AIDS. Differences and similarities in responses were determined using the Fischer exact test and the Cochran-Mantzel-Haenszel test. Results No significant differences were found between AIDS affected and non-affected adults. Results of the study do reveal differences in the use of form and function descriptors among the children. There is a statistically significant difference in the use of form descriptors between one-parent orphans and non-orphans and in descriptors of specific damages to maize. One-parent paternal orphans were exactly like non-affected adults in their 50/50 balanced expertise in the use of both form and function descriptors. One-parent orphans also had the highest number of descriptors used by children overall and these descriptors are spread across the various aspects of the knowledge domain relative to non-orphans. Conclusions Rather than a knowledge loss for one-parent orphans, particularly paternal orphans, we believe we are witnessing

  16. Evaluating the Sustainability of Community-Based Long-Term Care Programmes: A Hybrid Multi-Criteria Decision Making Approach

    Directory of Open Access Journals (Sweden)

    Baoan Song

    2016-07-01

    Full Text Available Sustainability is a crucial factor in Long-Term Care (LTC programmes, which implies whether the programmes have the capability of sustaining a quality service over the long term. To evaluate the sustainability of community-based LTC programmes, a novel hybrid framework has been demonstrated with a mixed Multi-Criteria Decision Making (MCDM technique. According to extensive literature review and the fuzzy Delphi method, four pillars of initial criteria and twelve sub-criteria have been determined. Then a weighted hierarchy has been constructed with Analytic Hierarchy Process (AHP to constitute the evaluation index system. In order to prove our framework, a case study of four community-based LTC programmes in Michigan is presented by applying the fuzzy technique for order preference by similarity to an ideal solution (TOPSIS method. The results indicate that programme P2 has the best potential of sustainability, and sub-criteria associated with economy outweigh other sub-criteria. The sensitivity analysis verifies that the result of the ranking remains stable regardless of the fluctuation in sub-criteria weights, which proves the evaluation results and proposed model to be accurate and effective. This study develops a comprehensive and effective framework for evaluating community-based LTC programmes from the sustainability perspective.

  17. EcoSImies of care: a proposal for decolonizing ‘sustainable development’

    NARCIS (Netherlands)

    Carrasco Miro, G.|info:eu-repo/dai/nl/411887025

    2017-01-01

    This article focuses on questions of power, colonialism and capitalist relations in order to understand and disrupt the dominant discourse and project of the 2030 Agenda for Sustainable Development. I analyse the mainstream sustainable development conceptual framework (WB 2012; UN 2015; UNDP 2016)

  18. Sustaining diabetes prevention and care interventions: A multiple case study of translational research projects.

    Science.gov (United States)

    Garst, J; L'Heveder, R; Siminerio, L M; Motala, A A; Gabbay, R A; Chaney, D; Cavan, D

    2017-08-01

    This study identifies the barriers and enablers for sustainability of interventions in primary and secondary prevention of diabetes. In the context of translational research, sustainability is defined as the continued use of program components and activities for the continued achievement of desirable program and population outcomes. In this study, eleven translational research projects, supported by the BRIDGES program of the International Diabetes Federation, were investigated. By theoretically-informed semi-structured interviews and analyses of project reports, qualitative data was collected on the sustainability outcomes and the barriers and enablers. The sustainability outcomes can be grouped in three main areas: (1) sustainability at the intervention site(s); (2) diffusion to the wider community; and (3) replication of the intervention at other site(s). Each of the outcomes has their own set of enablers and barriers, and thus requires consideration for a different sustainability strategy. This study is the first international study that relates the sustainability outcomes of translational research project to specific barriers and enablers, and develops an evidence-based framework which provides practical advice on how to ensure the sustainability of health interventions. Copyright © 2017. Published by Elsevier B.V.

  19. Loveness and her brothers: trajectories of life for children orphaned ...

    African Journals Online (AJOL)

    /AIDS interventions is how to handle and alleviate the plight of orphans and other vulnerable children (OVCs). The many glossy documents describing the policy and action plans of funders and organisations involved in AIDS work often ...

  20. Ethical considerations in orphan drug approval and use.

    Science.gov (United States)

    Kesselheim, A S

    2012-08-01

    The Orphan Drug Act seeks to meet a utilitarian goal of advancing therapeutic options for patients with rare diseases. However, data show that orphan drugs are often approved with more limited premarket testing than that carried out for nonorphan drugs and consequently expose patients to more risk and less certain efficacy. Therefore, the ethical principles of justice and beneficence may require attention to informed consent among patients receiving the drugs and greater investment in postmarket surveillance and confirmational testing.

  1. Development and preliminary evaluation of the resident coordinated-transitional care (RC-TraC) program: A sustainable option for transitional care education.

    Science.gov (United States)

    Chapman, Elizabeth; Eastman, Alexis; Gilmore-Bykovskyi, Andrea; Vogelman, Bennett; Kind, Amy Jo

    2016-10-17

    Older adults often face poor outcomes when transitioning from hospital to home. Although physicians play a key role in overseeing transitions, there is a lack of practice-based educational programs that prepare resident physicians to manage care transitions of older adults. An educational intervention to provide residents with real-life transitional care practice was therefore developed-Resident-coordinated Transitional Care (RC-TraC). RC-TraC adapted the evidence-based Coordinated-Transitional Care (C-TraC) nurse role for residents, providing opportunities to follow patients during the peri-hospital period without additional costs to the residency program. Between July 2010 and June 2013, 31 internal medicine residents participated in RC-TraC, caring for 721 patients. RC-TraC has been a sustainable, low-cost, practice-based education experience that is recognized as transitional care education by residents and continues in operation to this day. RC-TraC is a promising option for geriatric-based transitional care education of resident physicians and could also be adapted for nonphysician learners.

  2. Public long-term care insurance: a way to ensure sustainable continuity of care for frail older people.

    Science.gov (United States)

    Hébert, Réjean

    2011-01-01

    A necessary component of the prescribed continuing care act should be the creation of a long-term care insurance program in Canada. This social innovation has been implemented in many countries in recent decades to address the aging of the population and associated pandemic of chronic diseases. A specific autonomy insurance fund would have to be created and funded through transfers of current funding for long-term care, tax credits for disabled individuals and substantial new investment to make the shift from institutional to home care. Following a standardized assessment by case managers, an autonomy support benefit would be determined to fund "in kind" public or private services or a "cash-for-care" allowance for older people to purchase services. Case managers would be responsible for coordinating the care, controlling the quality of services and reassessing needs according to changes in individuals' conditions. Funding reform of long-term care would prioritize home care and optimize the functioning of integrated care to improve support for frail older people.

  3. Shining a light in the black box of orphan drug pricing.

    Science.gov (United States)

    Picavet, Eline; Morel, Thomas; Cassiman, David; Simoens, Steven

    2014-04-27

    The pricing mechanism of orphan drugs appears arbitrary and has been referred to as a "black box". Therefore, the aim of this study is to investigate how drug- and disease-specific variables relate to orphan drug prices. Additionally, we aim to explore if certain country-specific pricing and reimbursement policies affect the price level of orphan drugs. Annual treatment costs per indication per patient were calculated for 59 orphan drugs with a publicly available price in Belgium, the Netherlands, Czech Republic, France, Italy and the United Kingdom. A multiple linear regression model was built with 14 drug- and disease-specific variables. A Mann-Whitney U test was used to explore whether there is a correlation between annual treatment costs of orphan drugs across countries with different pricing and reimbursement policies. Repurposed orphan drugs, orally administered orphan drugs or orphan drugs for which an alternative treatment is available are associated with lower annual treatment costs. Orphan drugs with multiple orphan indications, for chronic treatments or for which an improvement in overall survival or quality-of-life has been demonstrated, are associated with higher annual treatment costs. No association was found between annual treatments cost of orphan drugs across countries and the different pricing and reimbursement systems. This study has shown that prices of orphan drugs are influenced by factors such as the availability of an alternative drug treatment, repurposing, etc. Current debate about the affordability of orphan drugs highlights the need for more transparency in orphan drug price setting.

  4. Targeted neurosurgical outreach: 5-year follow-up of operative skill transfer and sustainable care in Lima, Peru.

    Science.gov (United States)

    Duenas, Vincent J; Hahn, Edward J; Aryan, Henry E; Levy, Michael V; Jandial, Rahul

    2012-08-01

    This study evaluates the efficacy of operative skill transfer in the context of targeted pediatric outreach missions. In addition, the ability to implement surgical care improvements that are sustainable is investigated. Three 1-week targeted neurosurgical missions were performed (2004-2006) to teach neuroendoscopy, which included donation of the necessary equipment so newly acquired surgical skills could be performed by local neurosurgeons in between and after the departure of the mission team. After the targeted missions were completed, 5 years of neuroendoscopy case follow-up data were obtained. After performing pediatric neurosurgery missions in 2004-2006, with a focus on teaching neuroendoscopy, the host team demonstrated the sustainability of our didactic efforts in the subsequent 5 years by performing cases independently for their citizens. To date, a total of 196 operations have been performed in the past 5 years independent of any visiting team. Effective operative skill transfer to host neurosurgeons can be accomplished with limited international team visits utilizing a targeted approach that minimizes expenditures on personnel and capital. With the priority being teaching of an operative technique, as opposed to perennially performing operations by the mission team, sustainable surgical care was achieved after missions officially concluded.

  5. Exploring Factors Associated with Educational Outcomes for Orphan and Abandoned Children in India.

    Science.gov (United States)

    Sinha, Aakanksha; Lombe, Margaret; Saltzman, Leia Y; Whetten, Kathryn; Whetten, Rachel

    2016-03-01

    India has more than 25 million orphan and abandoned children (UNICEF, 2012). The burden of care for these OAC is on caregivers that are often ill equipped to meet their needs due to inadequate assets. Previous studies suggest that in communities with limited resources, OAC residing with non-biological caregivers are more at risk than those fostered by a biological parent. This study explores the association of caregiver and child characteristics with OAC educational outcome in India. The analysis was conducted using hierarchical logistic regression. The findings have implications for practice and policy in the global child welfare field.

  6. Variability Among US Intensive Care Units in Managing the Care of Patients Admitted With Preexisting Limits on Life-Sustaining Therapies.

    Science.gov (United States)

    Hart, Joanna L; Harhay, Michael O; Gabler, Nicole B; Ratcliffe, Sarah J; Quill, Caroline M; Halpern, Scott D

    2015-06-01

    Although the end-of-life care patients receive is known to vary across nations, regions, and centers, these differences are best explored within a group of patients with presumably similar care preferences. To examine the proportions of patients admitted to the intensive care unit (ICU) with limitations on life-sustaining treatments and the proportions of such patients who receive aggressive care across individual ICUs. Retrospective cohort study using the Project IMPACT database (from April 1, 2001, to December 31, 2008) including 141 ICUs in 105 hospitals in the United States and 277,693 ICU patient visits. We used logistic regression analysis models adjusted for available patient characteristics and clustered visits by individual ICU. The full analysis was last performed in October 2014. Outcomes included the provision of (1) cardiopulmonary resuscitation, (2) new forms of life support, and the (3) addition or (4) reversal of treatment limitations. Of the ICU admissions evaluated, 4.8% (95% CI, 4.7%-4.9%) had previously established treatment limitations. Patients admitted with treatment limitations were more likely to be older with more functional limitations and comorbidities. Among patients who survived to hospital discharge, more experienced reversals of existing treatment limitations during the ICU stay (17.8% [95% CI, 17.0%-18.7%]) than additions of new limits (11.7% [95% CI, 11.1%-12.4%]) (P ICU admission (20.2% [95% CI, 1.8%-76.2%]). The observed variability could not be consistently explained using measurable center-level characteristics. Intensive care units vary dramatically in how they manage care for patients admitted with treatment limitations. Among patients who survive, escalations in the aggressiveness of care are more common during the ICU stay than are de-escalations in aggressiveness. This study cannot directly measure whether care received was consistent with patients' preferences but suggests that ICU culture and physicians' practice

  7. Collaborating while competing? The sustainability of community-based integrated care initiatives through a health partnership

    NARCIS (Netherlands)

    Plochg, T.; Delnoij, D.M.J.; Hoogedoorn, N.P.C.; Klazinga, N.S.

    2006-01-01

    Background: To improve health-care delivery, care providers must base their services on community health needs and create a seamless continuum of care in which these needs can be met. Though, it is not obvious that providers apply this vision. Experiments with regulated competition in the health

  8. [Risk sharing agreements: with orphan drugs?].

    Science.gov (United States)

    Campillo-Artero, C; del Llano, J; Poveda, J L

    2012-01-01

    To summarize available information on share risk agreements (RSA) with orphan drugs (OD). A bibliographic search was carried out in MEDLINE, EMBASE and INAHTA using 19 keywords and combinations thereof. Papers published as original, narrative and systematic reviews, editorials, commentaries, letters to the Editor, and special articles were included and reviewed. Public or private institutional reports or documents found in Google that contained relevant information were also reviewed. experience gained so far with RSA is scant. No published rigorous evaluations of outcomes of these agreements were found. It seems, however, that OD are suitable for introduction in clinical practice by means of RSA. There are two main types of RSA: financially based, and performance-outcome based. A number of theoretical advantages of SRA are described, as well as hurdles that hinder their design, implementation, and followup, and thus endangering their success. Very few RSA have clearly succeed so far. If thoroughly managed, RSA may reasonably contribute to value-based pricing of OD, improve their pharmacovigilance, knowledge about their comparative effectiveness, and to reducing uncertainty and its consequences on patients, industry, payers and clinicians. There are technical groups that can bring the essential knowledge to manage RSA in Spain. The challenge now is to be able to harmonize their assessments and appraisals, to put in motion the mechanisms needed to overcome those hurdles, and to provide them adequate political and institutional support. Copyright © 2012 SEFH. Published by AULA MEDICA. All rights reserved.

  9. The challenge of treating orphan disease.

    Science.gov (United States)

    Dias, Carlos; Selmi, Carlo

    2014-12-01

    Uncommon or orphan diseases are less frequently addressed in mainstream medical journals and, as a consequence, their understanding and clinical recognition may rely on case series or anecdotal data with limited guidelines and management directions. The study of selected underrepresented autoimmune and allergy conditions is the subject of the present issue of Clinical Reviews in Allergy and Immunology to provide peculiar perspectives on common and rare themes. First, allergy remains a major concern for physicians worldwide despite the limited developments over the past years, particularly for antigens such as mite or Alternaria alternata, and due to the increasing incidence of drug hypersensitivity. Second, the female predominance of autoimmune diseases such as systemic sclerosis is well recognized but enigmatic, and a unifying hypothesis remains elusive. Third, the management of conditions triggered by infectious agents as in Guillain-Barre syndrome or mixed cryoglobulinemia is challenging, and clinical guidelines are needed in the setting of infections and autoimmunity. Fourth, gamma-delta T cells represent major players in innate immunity and are the subject of extensive studies in autoimmune diseases to provide new therapeutic targets for disease prevention or modulation in the near future. Ultimately, we acknowledge the major developments in the broad fields of rheumatology and immunology and expect that microbiota definition, epigenetics studies, and microRNA analysis will provide new exciting avenues toward the understanding and treatment of chronic and acute inflammation.

  10. ORENZA: a web resource for studying ORphan ENZyme activities

    Directory of Open Access Journals (Sweden)

    Labedan Bernard

    2006-10-01

    Full Text Available Abstract Background Despite the current availability of several hundreds of thousands of amino acid sequences, more than 36% of the enzyme activities (EC numbers defined by the Nomenclature Committee of the International Union of Biochemistry and Molecular Biology (NC-IUBMB are not associated with any amino acid sequence in major public databases. This wide gap separating knowledge of biochemical function and sequence information is found for nearly all classes of enzymes. Thus, there is an urgent need to explore these sequence-less EC numbers, in order to progressively close this gap. Description We designed ORENZA, a PostgreSQL database of ORphan ENZyme Activities, to collate information about the EC numbers defined by the NC-IUBMB with specific emphasis on orphan enzyme activities. Complete lists of all EC numbers and of orphan EC numbers are available and will be periodically updated. ORENZA allows one to browse the complete list of EC numbers or the subset associated with orphan enzymes or to query a specific EC number, an enzyme name or a species name for those interested in particular organisms. It is possible to search ORENZA for the different biochemical properties of the defined enzymes, the metabolic pathways in which they participate, the taxonomic data of the organisms whose genomes encode them, and many other features. The association of an enzyme activity with an amino acid sequence is clearly underlined, making it easy to identify at once the orphan enzyme activities. Interactive publishing of suggestions by the community would provide expert evidence for re-annotation of orphan EC numbers in public databases. Conclusion ORENZA is a Web resource designed to progressively bridge the unwanted gap between function (enzyme activities and sequence (dataset present in public databases. ORENZA should increase interactions between communities of biochemists and of genomicists. This is expected to reduce the number of orphan enzyme

  11. Children's psychosocial wellbeing in the context of HIV/AIDS and poverty: a comparative investigation of orphaned and non-orphaned children living in South Africa.

    Science.gov (United States)

    Govender, Kaymarlin; Reardon, Candice; Quinlan, Tim; George, Gavin

    2014-06-18

    Recent studies have questioned whether orphanhood is primarily associated with key dimensions of psycho-social wellbeing in children living in circumstances of material deprivation and high prevalence of HIV and AIDS. This study uses cross-sectional data from a longitudinal study conducted between 2004-2007 to examine the psychosocial well-being of orphans and non-orphans in the Amajuba District of KwaZulu-Natal, South Africa. Psychosocial wellbeing included an assessment of orphans' and non orphans' level of anxiety and depression, affability and resilience. Stratified cluster sampling, based on both school and age, was used to construct a cohort of recent orphans and non-orphans and their households, randomly selected from schools. Levels of anxiety and depression, affability and resilience did not differ significantly between orphans and non-orphans, nor did salient household, poverty and caregiver characteristics vary substantially amongst orphans and non-orphans. Multivariate analyses indicated that children's psychosocial outcomes, when controlling for orphan status and related demographic variables were more strongly influenced by household composition/size, living above or below the poverty threshold and factors associated with the caregiver-child relationship and caregiver health. The results muster additional evidence for moving beyond narrow definitions of vulnerability associated exclusively with orphanhood to consider the multitude of material, social and relational factors affecting the psycho-social well-being of children in general who are living in circumstances of poverty and HIV and AIDS.

  12. Does the ``National Free Health Care'' have financial sustainability in China? A case of Shenmu County, Shaanxi Province, China.

    Science.gov (United States)

    Wang, Lijian

    2015-01-01

    The most populous country in the world, China needs more health care. Shenmu's practices show that National Free Health Care (NFHC) system has played an active role in fulfilling the citizen's needs of health care, and alleviating the difficulties in affording the medical costs and seeing doctors. But NFHC system needs substantial financial supporting. It is worth in-depth discussing and reflecting on whether the NFHC system suits China's national conditions. The paper establishes the population age structure forecasting model and NFHC financial burden model by decomposition methodology and actuarial modelling. And it finds than the financial burden of NFHC system in Shenmu will be increased from 256.64 million Yuan to 656.04 million Yuan in 2013-2020, with the growth rate 12.45%. Meanwhile, the percentage of the financial burden in government's annual revenue is less than 2% in 2013-2020, NFHC system has financial sustainability in Shenmu. According to the successful experience abroad and the calculated results in Shenmu, to extend the NFHC system to the whole of China has financial sustainability and realistic possibility.

  13. Sustainable viticulture and winery practices in California: What is it, and do customers care?

    Directory of Open Access Journals (Sweden)

    Gary Zucca

    2009-06-01

    Full Text Available Gary Zucca1,2, David E Smith3,4, Darryl J Mitry5,61National University, Stockton, CA, USA; 2Owner and Winemaker, Zucca Mountain Vineyards, Vallecito, CA, USA; 3National University, Costa Mesa, CA, USA; 4Copenhagen Business School, Copenhagen, Denmark; 5Graduate School Faculty, Norwich University, Northfield, VT, USA; 6National University, San Diego, CA, USAAbstract: Producers in the wine industry are increasingly competing in the area of product differentiation. The focus of this article is product differentiation via sustainable viticulture and consumer perception. The authors report on their independent research, assess previous findings in the literature, and examine the industry trends. The study concludes with important observations on wine consumer perceptions of sustainable practices in the wine industry and implications for industry practices and product development.Keywords: California, biologique, organic, biodynamic, sustainable

  14. The US Orphan Drug Act: rare disease research stimulator or commercial opportunity?

    Science.gov (United States)

    Wellman-Labadie, Olivier; Zhou, Youwen

    2010-05-01

    This study investigates issues associated with the United States Orphan Drug Act. A comprehensive orphan drug database was compiled from FDA data and corporate annual reports of major pharmaceutical companies. Analysis allowed the generation of a descriptive orphan drug portrait as well as documentation of orphan drugs along their lifecycle. Currently, 2002 products have obtained orphan drug designation with 352 drugs obtaining FDA approval. Approximately 33% of orphan drugs are oncology products. On average, products obtain 1.7 orphan designations with approximately 70% obtaining a single designation. At least 9% of orphan drugs have reached blockbuster status with two-thirds having two or more designations. An additional 25 orphan drugs had sales exceeding US$ 100 million in 2008 alone. Since 1983, at least 14 previously discontinued products have been recycled as orphan drugs. The United States Orphan Drug Act has created issues which, in some cases, have led to commercial and ethical abuses. Orphan Drug Act reform is necessary but current incentives, including 7 year market exclusivity, should be maintained in order to favour patients as well as economic prosperity. Suggested reforms include price regulation, subsidy paybacks for profitable drugs and the establishment of an International Orphan Drug Office. Copyright (c) 2009 Elsevier Ireland Ltd. All rights reserved.

  15. [Practical taxonomy of health care containment/disinvestment in non-value-added care in order to have a sustainable NHS].

    Science.gov (United States)

    Repullo, J R

    2012-01-01

    The environment of severe cost containment has led to the active search of "internal sustainability" of health systems; the disinvestment in all non-value added services is one of the tools used. This article provides the taxonomy to identify ineffective, unsafe, unnecessary, unsuccessful, unkind and unwise care practices and discusses their implications in relation to patients ordered according to their severity, as well as the expected health gains of the intervention. Finally, the feasibility of those disinvestment policies is analysed according to macro-, middle, and micro-management scenarios. Copyright © 2012 SECA. Published by Elsevier Espana. All rights reserved.

  16. [Cooperation, Job Satisfaction and Burn Out - Sustainability in Outpatient Mental Health Care among Medical Specialists in Germany].

    Science.gov (United States)

    Baumgardt, Johanna; Moock, Jörn; Rössler, Wulf; Kawohl, Wolfram

    2017-04-01

    Objective Cooperation, job satisfaction, and burn out risk are indicators of sustainability in mental health services. Thus they were assessed among registered medical specialists in outpatient mental health care in Germany. Method A postal survey consisting of three questionnaires about cooperation, job satisfaction, and burnout was carried out among all registered medical specialists in outpatient mental health care in Germany (n = 4,430). Results 14.1 % (n = 626) of the specialists responded to the survey. Quality and quantity of cooperation regarding mental health care services were rated diverse, job satisfaction was assessed medium to high, and burnout risk was low to medium. Higher job satisfaction correlated with good quality of cooperation, fewer years of practice, fewer patients' chronically ill, more patients who as well seek psychotherapy, and less time spent on cooperation. Low burn out risk correlated with good quality of cooperation, higher age, single practice setting and a higher amount of patients who as well seek psychotherapy. Conclusion Quality and quantity of cooperation in outpatient mental health care - especially regarding community mental health care institutions - should be fostered. Aspects to be considered to reinforce job satisfaction and minimize burn out risk are age, years of practice, quality and quantity of cooperation, practice setting, and the mixture of patients. © Georg Thieme Verlag KG Stuttgart · New York.

  17. Accounting for orphaned aftershocks in the earthquake background rate

    Science.gov (United States)

    Van Der Elst, Nicholas

    2017-01-01

    Aftershocks often occur within cascades of triggered seismicity in which each generation of aftershocks triggers an additional generation, and so on. The rate of earthquakes in any particular generation follows Omori's law, going approximately as 1/t. This function decays rapidly, but is heavy-tailed, and aftershock sequences may persist for long times at a rate that is difficult to discriminate from background. It is likely that some apparently spontaneous earthquakes in the observational catalogue are orphaned aftershocks of long-past main shocks. To assess the relative proportion of orphaned aftershocks in the apparent background rate, I develop an extension of the ETAS model that explicitly includes the expected contribution of orphaned aftershocks to the apparent background rate. Applying this model to California, I find that the apparent background rate can be almost entirely attributed to orphaned aftershocks, depending on the assumed duration of an aftershock sequence. This implies an earthquake cascade with a branching ratio (the average number of directly triggered aftershocks per main shock) of nearly unity. In physical terms, this implies that very few earthquakes are completely isolated from the perturbing effects of other earthquakes within the fault system. Accounting for orphaned aftershocks in the ETAS model gives more accurate estimates of the true background rate, and more realistic expectations for long-term seismicity patterns.

  18. Accounting for orphaned aftershocks in the earthquake background rate

    Science.gov (United States)

    van der Elst, Nicholas J.

    2017-11-01

    Aftershocks often occur within cascades of triggered seismicity in which each generation of aftershocks triggers an additional generation, and so on. The rate of earthquakes in any particular generation follows Omori's law, going approximately as 1/t. This function decays rapidly, but is heavy-tailed, and aftershock sequences may persist for long times at a rate that is difficult to discriminate from background. It is likely that some apparently spontaneous earthquakes in the observational catalogue are orphaned aftershocks of long-past main shocks. To assess the relative proportion of orphaned aftershocks in the apparent background rate, I develop an extension of the ETAS model that explicitly includes the expected contribution of orphaned aftershocks to the apparent background rate. Applying this model to California, I find that the apparent background rate can be almost entirely attributed to orphaned aftershocks, depending on the assumed duration of an aftershock sequence. This implies an earthquake cascade with a branching ratio (the average number of directly triggered aftershocks per main shock) of nearly unity. In physical terms, this implies that very few earthquakes are completely isolated from the perturbing effects of other earthquakes within the fault system. Accounting for orphaned aftershocks in the ETAS model gives more accurate estimates of the true background rate, and more realistic expectations for long-term seismicity patterns.

  19. Caring for healthcare entrepreneurs - Towards successful entrepreneurial strategies for sustainable innovations in Dutch healthcare

    NARCIS (Netherlands)

    Janssen, M.; Moors, E.H.M.

    The sustainability of current healthcare systems is threatened by several societal developments, including an aging population, an increase of unmet medical needs and rising healthcare costs. A transition is needed in order to meet these threats and to achieve a proper balance between the demand for

  20. Nurses' Experiences of End-of-life Care in Long-term Care Hospitals in Japan: Balancing Improving the Quality of Life and Sustaining the Lives of Patients Dying at Hospitals

    National Research Council Canada - National Science Library

    Ryo Odachi; Tomoko Tamaki; Mikiko Ito; Taketoshi Okita; Yuri Kitamura; Tomotaka Sobue

    2017-01-01

    .... Results The core category that emerged from the analysis was “Balancing enhancement of patients' daily life quality and life-sustaining care in the face of uncertainty about the patients' character...

  1. The Role of Health Care Provider Goals, Plans, and Physician Orders for Life-Sustaining Treatment (POLST) in Preparing for Conversations About End-of-Life Care.

    Science.gov (United States)

    Russell, Jessica

    2016-09-01

    The Physician Orders for Life-Sustaining Treatment (POLST) is a planning tool representative of an emerging paradigm aimed at facilitating elicitation of patient end-of-life care preferences. This study assessed the impact of the POLST document on provider goals and plans for conversations about end-of-life care treatment options. A 2 (POLST: experimental, control) × 3 (topic of possible patient misunderstanding: cardiopulmonary resuscitation, medical intervention, artificially administered nutrition) experimental design was used to assess goals, plan complexity, and strategies for plan alterations by medical professionals. Findings suggested that the POLST had little impact on plan complexity or reaction time with initial plans. However, preliminary evidence suggested that the utility of the POLST surfaced with provider responses to patient misunderstanding, in which differences in conditions were identified. Significant differences in goals reported as most important in driving conversational engagement emerged. Implications for findings are discussed.

  2. Round table: the silent revolution towards sustainable health care systems in Europe. (workshop)

    NARCIS (Netherlands)

    Groenewegen, P.P.

    2013-01-01

    Under the subsidiarity principles of the EU Member States have always had great autonomy in organising their health care systems, contributing to the patchwork of different health care systems across the EU. However, due to the continuing economic and political crisis, an unprecedented - and

  3. Sustainability of comprehensive universal long-term care insurance in the Netherlands

    NARCIS (Netherlands)

    F.T. Schut (Erik); B. van den Berg (Bernard)

    2010-01-01

    textabstractThe Netherlands was the first country that introduced a universal mandatory social health insurance scheme for covering a broad range of long-term care (LTC) services provided in a variety of care settings. Compared with most other OECD countries, both total and public expenditure on LTC

  4. A Regulatory Network Analysis of Orphan Genes in Arabidopsis Thaliana

    Science.gov (United States)

    Singh, Pramesh; Chen, Tianlong; Arendsee, Zebulun; Wurtele, Eve S.; Bassler, Kevin E.

    Orphan genes, which are genes unique to each particular species, have recently drawn significant attention for their potential usefulness for organismal robustness. Their origin and regulatory interaction patterns remain largely undiscovered. Recently, methods that use the context likelihood of relatedness to infer a network followed by modularity maximizing community detection algorithms on the inferred network to find the functional structure of regulatory networks were shown to be effective. We apply improved versions of these methods to gene expression data from Arabidopsis thaliana, identify groups (clusters) of interacting genes with related patterns of expression and analyze the structure within those groups. Focusing on clusters that contain orphan genes, we compare the identified clusters to gene ontology (GO) terms, regulons, and pathway designations and analyze their hierarchical structure. We predict new regulatory interactions and unravel the structure of the regulatory interaction patterns of orphan genes. Work supported by the NSF through Grants DMR-1507371 and IOS-1546858.

  5. Migration, Household Configurations, and the Well-Being of Adolescent Orphans in Rwanda

    OpenAIRE

    Kevin J.A. Thomas

    2012-01-01

    This study uses data from the 2002 Rwandan census to situate the discourse on migration and orphan well-being within the context of the household. According to its findings, migrant orphans are less likely than non-migrant orphans to live in households with less favorable structural characteristics such as single-parent households. Significant differences are also found in the implied gains to living standards and schooling associated with migration among paternal, maternal, and double-orphan...

  6. Shining a light in the black box of orphan drug pricing

    OpenAIRE

    Picavet, Eline; Morel, Thomas; Cassiman, David; Simoens, Steven

    2014-01-01

    Background The pricing mechanism of orphan drugs appears arbitrary and has been referred to as a “black box”. Therefore, the aim of this study is to investigate how drug- and disease-specific variables relate to orphan drug prices. Additionally, we aim to explore if certain country-specific pricing and reimbursement policies affect the price level of orphan drugs. Methods Annual treatment costs per indication per patient were calculated for 59 orphan drugs with a publicly available price in B...

  7. Telehealth services in rural and remote Australia: a systematic review of models of care and factors influencing success and sustainability.

    Science.gov (United States)

    Bradford, Natalie K; Caffery, Liam J; Smith, Anthony C

    2016-01-01

    With the escalating costs of health care, issues with recruitment and retention of health practitioners in rural areas, and poor economies of scale, the question of delivering people to services or services to people is a dilemma for health authorities around the world. People living in rural areas have poorer health outcomes compared to their urban counterparts, and the problem of how to provide health care and deliver services in rural locations is an ongoing challenge. Telehealth services can efficiently and effectively improve access to healthcare for people living in rural and remote areas of Australia. However, telehealth services are not mainstream or routinely available in many rural and remote locations. The barriers to integration of telehealth into mainstream practice have been well described, but not the factors that may influence the success and sustainability of a service. Our aim was to collate, review and synthesise the available literature regarding telehealth services in rural and remote locations of Australia, and to identify the factors associated with their sustained success. A systematic literature review of peer-reviewed and grey literature was undertaken. Electronic databases were searched for potentially relevant articles. Reference lists of retrieved articles and the grey literature were also searched. Searches identified 970 potentially eligible articles published between 1988 and 2015. Studies and manuscripts of any type were included if they described telehealth services (store-and-forward or real-time videoconferencing) to provide clinical service or education and training related to health care in rural or remote locations of Australia. Data were extracted according to pre-defined criteria and checked for completeness and accuracy by a second reviewer. Any disagreements were resolved with discussion with a third researcher. All articles were appraised for quality and levels of evidence. Data were collated and grouped into categories

  8. Sustained improvement in clinical preventive service delivery among independent primary care practices after implementing electronic health record systems.

    Science.gov (United States)

    Wang, Jason J; Sebek, Kimberly M; McCullough, Colleen M; Amirfar, Sam J; Parsons, Amanda S; Singer, Jesse; Shih, Sarah C

    2013-08-01

    Studies showing sustained improvements in the delivery of clinical preventive services are limited. Fewer studies demonstrate sustained improvements among independent practices that are not affiliated with hospitals or integrated health systems. This study examines the continued improvement in clinical quality measures for a group of independent primary care practices using electronic health records (EHRs) and receiving technical support from a local public health agency. We analyzed clinical quality measure performance data from a cohort of primary care practices that implemented an EHR at least 3 months before October 2009, the study baseline. We assessed trends for 4 key quality measures: antithrombotic therapy, blood pressure control, smoking cessation intervention, and hemoglobin A1c (HbA1c) testing based on monthly summary data transmitted by the practices. Of the 151 practices, 140 were small practices and 11 were community health centers; average time using an EHR was 13.7 months at baseline. From October 2009 through October 2011, average rates increased for antithrombotic therapy (from 58.4% to 74.8%), blood pressure control (from 55.3% to 64.1%), HbA1c testing (from 46.4% to 57.7%), and smoking cessation intervention (from 29.3% to 46.2%). All improvements were significant. During 2 years, practices showed significant improvement in the delivery of several key clinical preventive services after implementing EHRs and receiving support services from a public health agency.

  9. Incentives in Rheumatology: the Potential Contribution of Physician Responses to Financial Incentives, Public Reporting, and Treatment Guidelines to Health Care Sustainability.

    Science.gov (United States)

    Harrison, Mark; Milbers, Katherine; Mihic, Tamara; Anis, Aslam H

    2016-07-01

    Concerns about the sustainability of current health care expenditure are focusing attention on the cost, quality and value of health care provision. Financial incentives, for example pay-for-performance (P4P), seek to reward quality and value in health care provision. There has long been an expectation that P4P schemes are coming to rheumatology. We review the available evidence about the use of incentives in this setting and provide two emerging examples of P4P schemes which may shape the future of service provision in rheumatology. Currently, there is limited and equivocal evidence in rheumatology about the impact of incentive schemes. However, reporting variation in the quality and provision of rheumatology services has highlighted examples of inefficiencies in the delivery of care. If financial incentives can improve the delivery of timely and appropriate care for rheumatology patients, then they may have an important role to play in the sustainability of health care provision.

  10. Good to Great: Quality-Improvement Initiative Increases and Sustains Pediatric Health Care Worker Hand Hygiene Compliance.

    Science.gov (United States)

    McLean, Heather S; Carriker, Charlene; Bordley, William Clay

    2017-04-01

    The Joint Commission, the Centers for Disease Control and Prevention, and the World Health Organization challenge hospitals to achieve and sustain compliance with effective hand hygiene (HH) practice; however, many inpatient units fail to achieve a high level of reliability. The aim of the project was to increase and sustain health care worker (HCW) compliance with HH protocols from 87% (level of reliability [LOR] 1) to ≥95% (LOR 2) within 9 months on 2 pediatric inpatient units in an academic children's hospital. This study was a time-series, quality-improvement project. Interventions were tested through multiple plan-do-study-act cycles on 2 pediatric inpatient units. HH compliance audits of HCWs on these units were performed randomly each week by the hospital infection prevention program. Control charts of percentages of HCW HH compliance were constructed with 3-σ (data within 3 SDs from a mean) control limits. These control limits were adjusted after achieving significant improvements in performance over time. Charts were annotated with interventions including (1) increasing awareness, (2) providing timely feedback, (3) empowering patients and families to participate in mitigation, (4) providing focused education, and (5) developing interdisciplinary HH champions. HH compliance rates improved from an average of 87% (LOR 1) to ≥95% (LOR 2) within 9 months, and this improvement has been sustained for >2 years on both pediatric inpatient units. Significant and sustained gains in HH compliance rates of ≥95% (LOR 2) can be achieved by applying high-reliability human-factor interventions. Copyright © 2017 by the American Academy of Pediatrics.

  11. Palliative Care and the Family Caregiver: Trading Mutual Pretense (Empathy) for a Sustained Gaze (Compassion).

    Science.gov (United States)

    Goldsmith, Joy; Ragan, Sandra L

    2017-04-13

    In this conceptual piece, we survey the progress of palliative care communication and reflect back on a chapter we wrote a decade ago, which featured the communication concept of mutual pretense, first described by Glaser and Strauss (1965). This work will include an update on family caregivers and their role in cancer caregiving as well as a review of current palliative care communication curriculum available for providers. And finally, we will spotlight the conversation and research going forward on the subject of health literacy for all stakeholders; patients, families, providers, and systems. We feature one family's story of incurable cancer and end of life to revisit the needs we identified ten years ago, which are still present. Goals for going forward in chronic and terminal illness are suggested in a health care context still too void of palliative care communication resources for providers, patients, and especially family caregivers.

  12. The quality of economic evaluations of ultra-orphan drugs in Europe - a systematic review

    NARCIS (Netherlands)

    Schuller, Y.; Hollak, C. E. M.; Biegstraaten, M.

    2015-01-01

    An orphan disease is defined in the EU as a disorder affecting less than 1 in 2 000 individuals. The concept of ultra-orphan has been proposed for diseases with a prevalence of less than 1:50 000. Drugs for ultra-orphan diseases are amongst the most expensive medicines on a cost-per-patient basis.

  13. Orphan drugs expenditure in the Netherlands in the period 2006-2012

    NARCIS (Netherlands)

    T.A. Kanters (Tim A.); A. Steenhoek (Adri); L. van Hakkaart-van Roijen (Leona)

    2014-01-01

    textabstractBackground: The relatively low budget impact of orphan drugs is often used as an argument in reimbursement decisions. However, overall, the budget impact of orphan drugs can still be substantial. In this study, we assess the uptake and budget impact of orphan drugs in the

  14. 77 FR 71452 - Extension of Comment Period: Orphan Works and Mass Digitization

    Science.gov (United States)

    2012-11-30

    ... Copyright Office Extension of Comment Period: Orphan Works and Mass Digitization AGENCY: Copyright Office... issues relating to orphan works and mass digitization under U.S. copyright law. DATES: Comments are due... relating to orphan works and mass digitization under U.S. copyright law. Due to the number and complexity...

  15. Orphan Drug Expenditures In The United States: A Historical And Prospective Analysis, 2007-18.

    Science.gov (United States)

    Divino, Victoria; DeKoven, Mitch; Kleinrock, Michael; Wade, Rolin L; Kaura, Satyin

    2016-09-01

    The Orphan Drug Act of 1983 established incentives for the development of drugs that treat rare, or orphan, diseases. We used the IMS Health MIDAS database of audited biopharmaceutical sales to measure US annual spending on orphan drugs in the period 2007-13, and we estimated spending on the drugs for the period 2014-18. We identified 356 brand-name orphan drugs that were approved by the Food and Drug Administration in the period 1983-2013. While we included orphan drugs with both orphan and other indications, we adjusted spending to include only spending for orphan indications. In 2014 dollars, expenditures on orphan drugs totaled $15 billion in 2007 and $30 billion in 2013-representing 4.8 percent and 8.9 percent of total pharmaceutical expenditures, respectively. Our future trend analysis for the period 2014-18 suggests a slowing in the growth of orphan drug expenditures. The overall impact of orphan drugs on payers' drug budgets is relatively small, and spending on orphan drugs as a percentage of total pharmaceutical expenditures has remained fairly stable. Concerns that growth in orphan drug expenditures may lead to unsustainable drug expenditures do not appear to be justified. Project HOPE—The People-to-People Health Foundation, Inc.

  16. 78 FR 44016 - Exclusion of Orphan Drugs for Certain Covered Entities Under 340B Program

    Science.gov (United States)

    2013-07-23

    ... Cosmetic Act for a rare disease or condition. Congress passed the Orphan Drug Act of 1983 to stimulate the... Development, administers the Orphan Drug Act and reviews requests for designations. A drug is designated by... HUMAN SERVICES 42 CFR Part 10 RIN 0906-AA94 Exclusion of Orphan Drugs for Certain Covered Entities Under...

  17. Accessing Social Grants to Meet Orphan Children School Needs: Namibia and South Africa Perspective

    Science.gov (United States)

    Taukeni, Simon; Matshidiso, Taole

    2013-01-01

    In this comparative paper we interrogate the access of social grants to meet orphan children school needs in Namibia and South Africa. We noted that the two governments are committed to provide orphan children with social grants to enable them to meet the school needs. However, accessing social grant to benefit most vulnerable orphan children…

  18. [Orphan drugs--medications for patients with rare diseases].

    Science.gov (United States)

    Thielke, Desirée; Thyssen, Jacob Pontoppidan; Hansen, Bo Jesper

    2006-06-05

    Orphan drugs (ODs) are products developed for the diagnosis and/or treatment of rare diseases and conditions. Patients with this group of disorders have historically been denied access to medical therapy because prescription drug manufacturers could rarely make a profit from marketing such drugs. This changed in 1983, when the U.S. Congress passed the Orphan Drug Act, creating financial incentives for manufacturers. Since 2000 the EU has had a similar regulation, resulting in more than 20 ODs being granted marketing authorisation in the EU.

  19. The many "small COPDs": COPD should be an orphan disease

    DEFF Research Database (Denmark)

    Rennard, Stephen I; Vestbo, Jørgen

    2008-01-01

    COPD is one of the most common causes of morbidity and mortality. Perhaps paradoxically, COPD also should be an orphan disease. Importantly, this could advance the development of treatments for COPD. There are two criteria for orphan status in the United States. Most widely known is the criterion...... are prospectively monitored, assuring that rigorous longitudinal data are generated. This approach could encourage the pharmaceutical industry to stratify studies based on a more detailed characterization of study subjects at baseline, thus approaching "many small COPDs" instead of a single large and heterogeneous...

  20. From research on rare diseases to new orphan drug development

    OpenAIRE

    Heemstra, H.E.

    2010-01-01

    Rare diseases have a prevalence of lower than 5 in 10,000 inhabitants and are life-threatening or chronically debilitating. It is estimated that worldwide more than 5000 rare diseases exist, which account for over 55 million patients in the EU and the US together. However, the development of drugs for rare diseases, so called orphan drugs has not been an area of high priority for the pharmaceutical industry so far. Therefore, dedicated orphan drug legislation has been introduced that aims to ...

  1. Exploring patient and family involvement in the lifecycle of an orphan drug: a scoping review.

    Science.gov (United States)

    Young, Andrea; Menon, Devidas; Street, Jackie; Al-Hertani, Walla; Stafinski, Tania

    2017-12-22

    Patients and their families have become more active in healthcare systems and research. The value of patient involvement is particularly relevant in the area of rare diseases, where patients face delayed diagnoses and limited access to effective therapies due to the high level of uncertainty in market approval and reimbursement decisions. It has been suggested that patient involvement may help to reduce some of these uncertainties. This review explored existing and proposed roles for patients, families, and patient organizations at each stage of the lifecycle of therapies for rare diseases (i.e., orphan drug lifecycle). A scoping review was conducted using methods outlined by Arksey and O'Malley. To validate the findings from the literature and identify any additional opportunities that were missed, a consultative webinar was conducted with members of the Patient and Caregiver Liaison Group of a Canadian research network. Existing and proposed opportunities for involving patients, families, and patient organizations were reported throughout the orphan drug lifecycle and fell into 12 themes: research outside of clinical trials; clinical trials; patient reported outcomes measures; patient registries and biorepositories; education; advocacy and awareness; conferences and workshops; patient care and support; patient organization development; regulatory decision-making; and reimbursement decision-making. Existing opportunities were not described in sufficient detail to allow for the level of involvement to be assessed. Additionally, no information on the impact of involvement within specific opportunities was found. Based on feedback from patients and families, documentation of existing opportunities within Canada is poor. Opportunities for patient, family, and patient organization involvement exist throughout the orphan drug lifecycle. However, based on the information found, it is not possible to determine which opportunities would be most effective at each stage.

  2. Child work and labour among orphaned and abandoned children in five low and middle income countries

    Directory of Open Access Journals (Sweden)

    Pence Brian

    2011-01-01

    Full Text Available Abstract Background The care and protection of the estimated 143,000,000 orphaned and abandoned children (OAC worldwide is of great importance to global policy makers and child service providers in low and middle income countries (LMICs, yet little is known about rates of child labour among OAC, what child and caregiver characteristics predict child engagement in work and labour, or when such work infers with schooling. This study examines rates and correlates of child labour among OAC and associations of child labour with schooling in a cohort of OAC in 5 LMICs. Methods The Positive Outcomes for Orphans (POFO study employed a two-stage random sampling survey methodology to identify 1480 single and double orphans and children abandoned by both parents ages 6-12 living in family settings in five LMICs: Cambodia, Ethiopia, India, Kenya, and Tanzania. Regression models examined child and caregiver associations with: any work versus no work; and with working Results The majority of OAC (60.7% engaged in work during the past week, and of those who worked, 17.8% (10.5% of the total sample worked 28 or more hours. More than one-fifth (21.9%; 13% of the total sample met UNICEF's child labour definition. Female OAC and those in good health had increased odds of working. OAC living in rural areas, lower household wealth and caregivers not earning an income were associated with increased child labour. Child labour, but not working fewer than 28 hours per week, was associated with decreased school attendance. Conclusions One in seven OAC in this study were reported to be engaged in child labour. Policy makers and social service providers need to pay close attention to the demands being placed on female OAC, particularly in rural areas and poor households with limited income sources. Programs to promote OAC school attendance may need to focus on the needs of families as well as the OAC.

  3. Health promotion strategies for families with adolescents orphaned by HIV and AIDS.

    Science.gov (United States)

    Peu, M D

    2014-06-01

    This paper aims to explore and describe health promotion strategies for adolescents orphaned by human immunodeficiency virus (HIV) and acquired immunodeficiency syndrome (AIDS), as well as the evaluation thereof. Among the Sub-Saharan countries, such as Swaziland, Botswana and Lesotho, South Africa is rated as fourth in the list of countries with the highest number of people living with HIV and AIDS. The study employed phenomenological qualitative design. The population consisted of the purposively selected health promoters working in the Hammanskraal region, directly and indirectly involved with families with adolescents orphaned by HIV and AIDS. Following the focus group interviews, data were analysed using the seven steps of Colaizzi. Four categories and eight subcategories were concluded as the strategies for adolescents orphaned by HIV and AIDS as well as the evaluation thereof. The main categories identified were: the door-to-door outcome, workshop outputs, statistical data and community projects. It is evident that the health promotion strategies informed by the four themes will be implemented. The outcomes may raise an awareness in the community, support families and provide statistics on the impact of HIV and AIDS on families. The study was limited to one subdistrict and to health promoters in a rural area, therefore the results cannot be generalized to all other subdistricts including health promoters, especially those in urban areas. The successful evaluation programme will pin out the strong points and challenges while assisting in improving the quality of work provided in the communities. Continuing professional and practice development are required to maintain the standard of health care in South Africa. Therefore the policymakers need to include relevant information regarding health promotion strategies in reducing the statistics of people living with HIV and AIDS. © 2014 International Council of Nurses.

  4. Privately funded quality health care in India: a sustainable and equitable model.

    Science.gov (United States)

    Samandar, R; Kleefield, S; Hammel, J; Mehta, M; Crone, R

    2001-08-01

    As the cost and degree of training necessary to provide state of the art health care has increased throughout the world, the present challenge in health care is to establish institutions that are financially sound and responsive to the dynamic needs of the communities in which they exist. As public funds have diminished, the role of the private sector in estabhshing innovative health care institutions has increased. This paper reviews the case of the LV Prasad Eye Institute (LVPEI), an ophthalmologic institute in Hyderabad, India, that is financially sound and medically vital. With an annual budget of US$3 million, 180 000 patients are seen and 23 000 surgeries are performed at the Institute and its satellites each year. The Institute provides patient care at a ratio of 1:1 non-paying to paying patients through fee cross-subsidization. The Institute uses a combination of financial modalities, including donations, grants and fees to administer its non-patient care programs. Non-clinical programs of the Institute include a paramedical training program and a fellowship in ophthalmology, an internationally accredited eye bank for the preservation of corneal tissues, a rural out-reach and education program, a basic science and epidemiology program that directs health policy activities of the Institute and a rehabilitation program for patients with incurable visual deficits. To evaluate its effectiveness, LVPEI uses quality improvement measures, including patient surveys, post-operative outcomes studies and service utlization reviews. This case report of a privately-funded medical institution describes a successful model through which high-quality, equitable health care can be provided in a developing country. The LVPEI's active program of quality management, its academic commitment and programmatic relevance to the needs of its community should be modularized and replicated to establish equitable, efficient and effective health care institutions in the developing world.

  5. Financial sustainability of home care in the health system of the Republic of Serbia

    Directory of Open Access Journals (Sweden)

    Konstantinović Dejan

    2013-01-01

    Full Text Available Introduction. Over the last several years, during the economic crisis, the Ministry of Health and the Republican Health Insurance Fund (RHIF have been faced with new challenges in the sphere of healthcare services financing both in the primary as well as other types of health insurance in the Republic of Serbia (RS. Objective. Analysis of cost­effectiveness of two models of organization of home treatment and healthcare in the primary insurance, with evaluation of the cost sustainability of a single visit by the in­home therapy team. Methods. Economic evaluation of the cost of home treatment and healthcare provision in 2011 was performed. In statistical analysis, the methods of descriptive statistics were employed. The structure of fixed costs of home healthcare was developed according to the RS official norms, as well as fixed costs of providing services of home therapy by the Healthcare Centre "New Belgrade". The statement of account for provided home therapy services was made utilizing the RHIF price list. Results. The results showed that the cost of home healthcare and therapy of the heterogeneous population of patients in the Healthcare Centre "New Belgrade" was more cost­effective in relation to the cost of providing home therapy services according to the RS official norms. Conclusion. Approved costs utilized when making a contract for services of home therapy and healthcare with the RHIF are not financially sustainable. It was shown that the price of 10 EUR for each home visit by the in­home therapy team enables sustainability of this form of providing healthcare services in RS.

  6. [Financial sustainability of home care in the health system of the Republic of Serbia].

    Science.gov (United States)

    Konstantinović, Dejan; Lazarević, Vesna; Milovanović, Valentina; Lapcević, Mirjana; Konstantinović, Vladan; Vuković, Mira

    2013-01-01

    Over the last several years, during the economic crisis, the Ministry of Health and the Republican Health Insurance Fund (RHIF) have been faced with new challenges in the sphere of healthcare services financing both in the primary as well as other types of health insurance in the Republic of Serbia (RS). Analysis of cost-effectiveness of two models of organization of home treatment and healthcare in the primary insurance, with evaluation of the cost sustainability of a single visit by the in-home therapy team. Economic evaluation of the cost of home treatment and healthcare provision in 2011 was performed. In statistical analysis, the methods of descriptive statistics were employed. The structure of fixed costs of home healthcare was developed according to the RS official norms, as well as fixed costs of providing services of home therapy by the Healthcare Centre "New Belgrade". The statement of account for provided home therapy services was made utilizing the RHIF price list. The results showed that the cost of home healthcare and therapy of the heterogeneous population of patients in the Healthcare Centre "New Belgrade" was more cost-effective in relation to the cost of providing home therapy services according to the RS official norms. Approved costs utilized when making a contract for services of home therapy and healthcare with the RHIF are not financially sustainable. It was shown that the price of 10 EUR for each home visit by the in-home therapy team enables sustainability of this form of providing healthcare services in RS.

  7. Incentives for orphan drug research and development in the United States.

    Science.gov (United States)

    Seoane-Vazquez, Enrique; Rodriguez-Monguio, Rosa; Szeinbach, Sheryl L; Visaria, Jay

    2008-12-16

    The Orphan Drug Act (1983) established several incentives to encourage the development of orphan drugs (ODs) to treat rare diseases and conditions. This study analyzed the characteristics of OD designations, approvals, sponsors, and evaluated the effective patent and market exclusivity life of orphan new molecular entities (NMEs) approved in the US between 1983 and 2007. Primary data sources were the FDA Orange Book, the FDA Office of Orphan Drugs Development, and the US Patent and Trademark Office. Data included all orphan designations and approvals listed by the FDA and all NMEs approved by the FDA during the study period. The FDA listed 1,793 orphan designations and 322 approvals between 1983 and 2007. Cancer was the main group of diseases targeted for orphan approvals. Eighty-three companies concentrated 67.7% of the total orphan NMEs approvals. The average time from orphan designation to FDA approval was 4.0 +/- 3.3 years (mean +/- standard deviation). The average maximum effective patent and market exclusivity life was 11.7 +/- 5.0 years for orphan NME. OD market exclusivity increased the average maximum effective patent and market exclusivity life of ODs by 0.8 years. Public programs, federal regulations, and policies support orphan drugs R&D. Grants, research design support, FDA fee waivers, tax incentives, and orphan drug market exclusivity are the main incentives for orphan drug R&D. Although the 7-year orphan drug market exclusivity provision had a positive yet relatively modest overall effect on effective patent and market exclusivity life, economic incentives and public support mechanisms provide a platform for continued orphan drug development for a highly specialized market.

  8. Incentives for orphan drug research and development in the United States

    Directory of Open Access Journals (Sweden)

    Rodriguez-Monguio Rosa

    2008-12-01

    Full Text Available Abstract Background The Orphan Drug Act (1983 established several incentives to encourage the development of orphan drugs (ODs to treat rare diseases and conditions. This study analyzed the characteristics of OD designations, approvals, sponsors, and evaluated the effective patent and market exclusivity life of orphan new molecular entities (NMEs approved in the US between 1983 and 2007. Methods Primary data sources were the FDA Orange Book, the FDA Office of Orphan Drugs Development, and the US Patent and Trademark Office. Data included all orphan designations and approvals listed by the FDA and all NMEs approved by the FDA during the study period. Results The FDA listed 1,793 orphan designations and 322 approvals between 1983 and 2007. Cancer was the main group of diseases targeted for orphan approvals. Eighty-three companies concentrated 67.7% of the total orphan NMEs approvals. The average time from orphan designation to FDA approval was 4.0 ± 3.3 years (mean ± standard deviation. The average maximum effective patent and market exclusivity life was 11.7 ± 5.0 years for orphan NME. OD market exclusivity increased the average maximum effective patent and market exclusivity life of ODs by 0.8 years. Conclusion Public programs, federal regulations, and policies support orphan drugs R&D. Grants, research design support, FDA fee waivers, tax incentives, and orphan drug market exclusivity are the main incentives for orphan drug R&D. Although the 7-year orphan drug market exclusivity provision had a positive yet relatively modest overall effect on effective patent and market exclusivity life, economic incentives and public support mechanisms provide a platform for continued orphan drug development for a highly specialized market.

  9. Improving and sustaining quality of child health care through IMCI training and supervision: experience from rural Bangladesh.

    Science.gov (United States)

    Hoque, D M Emdadul; Arifeen, Shams E; Rahman, Muntasirur; Chowdhury, Enayet K; Haque, Twaha M; Begum, Khadija; Hossain, M Altaf; Akter, Tasnima; Haque, Fazlul; Anwar, Tariq; Billah, Sk Masum; Rahman, Ahmed Ehsanur; Huque, Md Hamidul; Christou, Aliki; Baqui, Abdullah H; Bryce, Jennifer; Black, Robert E

    2014-09-01

    The Integrated Management of Childhood Illness (IMCI) strategy includes guidelines for the management of sick children at first-level facilities. These guidelines intend to improve quality of care by ensuring a complete assessment of the child's health and by providing algorithms that combine presenting symptoms into a set of illness classifications for management by IMCI-trained service providers at first-level facilities. To investigate the sustainability of improvements in under-five case management by two cadres of first-level government service providers with different levels of pre-service training following implementation of IMCI training and supportive supervision. Twenty first-level health facilities in the rural sub-district of Matlab in Bangladesh were randomly assigned to IMCI intervention or comparison groups. Health workers in IMCI facilities received training in case management and monthly supportive supervision that involved observations of case management and reinforcement of skills by trained physicians. Health workers in comparison facilities were supervised according to Government of Bangladesh standards. Health facility surveys involving observations of case management were carried out at baseline (2000) and at two points (2003 and 2005) after implementation of IMCI in intervention facilities. Improvement in the management of sick under-five children by IMCI trained service providers with only 18 months of pre-service training was equivalent to that of service providers with 4 years of pre-service training. The improvements in quality of care were sustained over a 2-year period across both cadres of providers in intervention facilities. IMCI training coupled with regular supervision can sustain improvements in the quality of child health care in first-level health facilities, even among workers with minimal pre-service training. These findings can guide government policy makers and provide further evidence to support the scale-up of regular

  10. Diabetes ongoing sustainable care and treatment (DOST: A strategy for informational deliverance through visual dynamic modules sustained by near peer mentoring

    Directory of Open Access Journals (Sweden)

    Ankur Joshi

    2016-01-01

    Full Text Available Background: The informational continuity for a diabetic patient is of paramount importance. This study on a pilot basis explores the process utility of structured educational modular sessions grounded on the principle of near-peer mentoring. Methodology: Visual modules were prepared for diabetic patients. These modules were instituted to 25 diabetic patients in logical sequences. In the next phase, 4 persons of these 25 patients were designated as diabetic-diabetes ongoing sustainable care and treatment (DOST. Each diabetic-DOST was clubbed with two patients for modular session and informational deliverance during the next 7 days. Process analysis was performed with “proxy-indicators,” namely, monthly glycemic status, knowledge assessment scores, and quality of life. Data were analyzed by interval estimates and through nonparametric analysis. Results: Nonparametric analysis indicated a significant improvement in glycemic status in terms with fasting blood sugar (W = 78 z = 3.04, P = 0.002, 2 h-postprandial blood sugar (W = 54, z = 2.01, P = 0.035, and in knowledge score (c2 = 19.53, df = 3; P = 0.0002. Quality of life score showed significant improvement in 2 out of 7 domains, namely, satisfaction with treatment ([difference in mean score = 1.40 [1.94 to 0.85] and symptom botherness (difference in mean score = 0.98 [1.3–0.65]. Conclusion: Because of inherent methodological limitations and innate biases, at this juncture no conclusive statement can be drawn. Although, primitive process evidences indicate the promising role of the diabetic-DOST strategy.

  11. What prevent women for a sustainable use of maternal care in two ...

    African Journals Online (AJOL)

    Introduction: Skilled attendance is one of the major strategies to curtail maternal mortality, specifically in developing countries. Despite the low level of equipment, it is only in health facilities that skilled care are provided during pregnancy and childbirth; but there are some barriers which prevent women to use health facilities ...

  12. Health Care, Heal Thyself! An Exploration of What Drives (and Sustains) High Performance in Organizations Today

    Science.gov (United States)

    Wolf, Jason A.

    2008-01-01

    What happens when researching the radical unveils the simplest of solutions? This article tells the story of the 2007 ISPI Annual Conference Encore Presentation, Healthcare, Heal Thyself, sharing the findings of an exploration into high-performance health care facilities and their relevance to all organizations today. It shows how to overcome…

  13. Psychosocial attributes of orphaned youths in Ibadan Metropolis ...

    African Journals Online (AJOL)

    Tropical Journal of Obstetrics and Gynaecology ... Objective: To determine the prevalence of orphans and associated psychosocial and reproductive health factors in rural and urban secondary school youths in Southwest Nigeria across two age groups, adolescents aged 17 years and below and youth aged 18-24 years.

  14. Assertiveness and attitudes of HIV/AIDS orphaned girls towards ...

    African Journals Online (AJOL)

    Whereas HIV/AIDS prevalence has been declining in Uganda from 30% to less than 10% in the last 2 decades, the number of HIV/AIDS orphaned girls in secondary schools is still high and girl children have tended to carry the heaviest burdens of family responsibilities thereby adversely affecting their assertiveness and ...

  15. The benefits and necessity of recreation for AIDS orphans: Through ...

    African Journals Online (AJOL)

    Millions of South African youth have been left behind as orphans as a result of the AIDS pandemic, turning to high risk behaviour to survive. These risk behaviours have a negative effect on their quality of life. To aggravate the problem further, most of these youths do not have access to recreation programmes and activities.

  16. The Psychosocial Adjustment Of Children Orphaned By AIDS | Wild ...

    African Journals Online (AJOL)

    It then proceeds to examine empirical evidence that more directly addresses the question of whether AIDS orphans are at risk for experiencing psychosocial adjustment difficulties, and discusses factors that might mediate or moderate children's adjustment to the AIDS-related death of their parent. Finally, it makes ...

  17. Nutritional status of HIV/AIDS orphaned children in households ...

    African Journals Online (AJOL)

    Although a lot of research has been conducted on the role of good nutrition in mitigating the effects of HIV/AIDS, little is known about the health and nutritional status of HIV/AIDS orphaned children who mostly live with their elderly grand parents. The major objective of this study was therefore to assess the nutritional status of ...

  18. Adolescent girls orphaned by AIDS in South Africa: Approaches in ...

    African Journals Online (AJOL)

    African Journal for Physical Activity and Health Sciences ... Adolescents orphaned by AIDS have particular vulnerabilities to a range of mental health difficulties and with that they face specific challenges that include stigma and discrimination, poverty, school drop-out and sexual and labour exploitation. However, there is ...

  19. Implementation of Oral Health Education to Orphan Children.

    Science.gov (United States)

    Khedekar, Mikhila; Suresh, K V; Parkar, M I; Malik, Neelima; Patil, Snehal; Taur, Swapnil; Pradhan, Debapriya

    2015-12-01

    To determine the knowledge and oral hygiene status of orphanage children in Pune and changes in them after health education. Interventional study. Centers for Orphan Children in Pune, India, from April to June 2014. A specially designed questionnaire was used to assess the dental problems and existing oral hygiene maintenance practice among children between 5 - 12 years of age (n=100) in an orphanage center. Pre- and postinterventional intra-oral examination was carried out to check their oral hygiene status which included DMFS [Decayed Missing Filled Tooth Surfaces index (for permanent teeth)], OHIS (Simplified Oral Hygiene Index) and gingival indices. Intervention was in the form of oral health education, demonstration of correct brushing technique, diet counselling and maintenance of overall oral hygiene. Present study shows that the orphans had multiple dental problems along with improper oral hygiene practices and careless attitude towards oral health. Pre- and post-interventional DMFS was compared using Wilcoxon sign rank test, which was not significant; while OHIS and gingival indices were compared by using repeat measures ANOVA(p educational intervention. Oral health education at right age can help to cultivate healthy oral hygiene practices in orphans which will benefit them for lifelong. Caretakers should be educated and trained about oral hygiene practices so that they can implement it and supervise the orphan children.

  20. factors associated with internalising problems in orphans and their

    African Journals Online (AJOL)

    2013-05-29

    May 29, 2013 ... perceived as undeserved and bullying independently predicted children's internalising problems. It is likely that orphans were exposed to stigma, not only did they report more bullying but they also identified being rejected by peers as one of their main concerns. It may be that children whose parents died ...

  1. The significance of gathering wild orchid tubers for orphan ...

    African Journals Online (AJOL)

    We investigated the role of gathering and selling the edible tubers of wild orchids by children orphaned by AIDS as one of their livelihood strategies, through a household survey administered to 152 households in three villages in the Southern Highlands of Tanzania during 2006 and 2007. Additionally, several household ...

  2. The vulnerability of orphans in Thyolo District, southern Malawi Å ...

    African Journals Online (AJOL)

    2007-05-02

    May 2, 2007 ... In addition, issues of love and companionship, discrimination and the future. Twenty-three ... Keywords: orphans, HIV/AIDS, discrimination, living situation, Malawi ..... things for self. More that half of the children felt that they were treated in a bad or different way within the family or within the household they.

  3. Information Needs and Information-seeking Behaviour of Orphans ...

    African Journals Online (AJOL)

    This study ascertained the information needs of orphaned and vulnerable children (OVC) and their caregivers and the information disseminating strategies used by key stakeholders in managing the OVC situation in Namibia. Both qualitative and quantitative methods were used, in the form of interviews focus group ...

  4. Orphan crops can turn into winners | IDRC - International ...

    International Development Research Centre (IDRC) Digital Library (Canada)

    2010-10-06

    Oct 6, 2010 ... It is not surprising that many of the orphan crops, in particular the protein-packed pulse crops, have figured prominently among the research proposals. That follows naturally from the fact that over the past fifteen years Canada has developed into a major player in world pulse markets. Since the early 1990s, ...

  5. Psychosocial support for orphans and vulnerable children in public ...

    African Journals Online (AJOL)

    Much has been written about orphans and vulnerable children (OVC) with regard to their education and living. However, relatively few studies have documented the psychosocial support provided for OVC in public primary schools to enhance their psychosocial well-being. This study therefore contributes to the ...

  6. High GC content causes orphan proteins to be intrinsically disordered.

    Directory of Open Access Journals (Sweden)

    Walter Basile

    2017-03-01

    Full Text Available De novo creation of protein coding genes involves the formation of short ORFs from noncoding regions; some of these ORFs might then become fixed in the population. These orphan proteins need to, at the bare minimum, not cause serious harm to the organism, meaning that they should for instance not aggregate. Therefore, although the creation of short ORFs could be truly random, the fixation should be subjected to some selective pressure. The selective forces acting on orphan proteins have been elusive, and contradictory results have been reported. In Drosophila young proteins are more disordered than ancient ones, while the opposite trend is present in yeast. To the best of our knowledge no valid explanation for this difference has been proposed. To solve this riddle we studied structural properties and age of proteins in 187 eukaryotic organisms. We find that, with the exception of length, there are only small differences in the properties between proteins of different ages. However, when we take the GC content into account we noted that it could explain the opposite trends observed for orphans in yeast (low GC and Drosophila (high GC. GC content is correlated with codons coding for disorder promoting amino acids. This leads us to propose that intrinsic disorder is not a strong determining factor for fixation of orphan proteins. Instead these proteins largely resemble random proteins given a particular GC level. During evolution the properties of a protein change faster than the GC level causing the relationship between disorder and GC to gradually weaken.

  7. The vulnerability of orphans in Thyolo District, southern Malawi ...

    African Journals Online (AJOL)

    The vulnerability of orphans in Thyolo District, southern Malawi. Å Funkquist, B Eriksson, AS Muula. Abstract. No Abstract. Tanzania Health Research Bulletin Vol. 9(2) 2007: pp.102-109. Full Text: EMAIL FREE FULL TEXT EMAIL FREE FULL TEXT · DOWNLOAD FULL TEXT DOWNLOAD FULL TEXT. Article Metrics. Metrics ...

  8. The experiences of AIDS orphans living in a township

    African Journals Online (AJOL)

    2012-02-21

    Feb 21, 2012 ... studied (Welman, Kruger & Mitchell 2010). The researcher, therefore, made use of a qualitative, exploratory, descriptive and contextual design with a phenomenological approach to inquiry, to explore and describe the lived experiences of AIDS orphans in a township. The research design selected, enabled.

  9. Challenges of hemodialysis in a new renal care center: call for sustainability and improved outcome

    Directory of Open Access Journals (Sweden)

    Oluyombo R

    2014-09-01

    Full Text Available Rotimi Oluyombo,1 Oluyomi O Okunola,2 Timothy O Olanrewaju,3 Michael O Soje,1 Omotola O Obajolowo,1 Margaret A Ayorinde11Renal Unit, Internal Medicine Department, Federal Medical Centre, Ido-Ekiti, Ekiti State, 2Renal Unit, Department of Internal Medicine, College of Health Sciences, Obafemi Awolowo University, Ile-Ife, Osun State, 3Renal Division, Internal Medicine Department, Faculty of Health Sciences, University of Ilorin, Ilorin, Kwara State, NigeriaBackground: Nephrologists are faced with enormous challenges in the management of patients with end-stage renal disease, especially in sub-Saharan Africa, where hemodialysis is the most common modality of renal replacement therapy in the region. Therefore, we reviewed our 3 years of experience with hemodialysis services in a tertiary hospital located in a rural community of South West Nigeria. This was with a view to presenting the profile of hemodialysis patients and the challenges they face in sustaining hemodialysis.Methods: We reviewed the case records and hemodialysis registers for 176 patients over the 3 years from November 2010 to December 2013. The data were analyzed using Statistical Package for the Social Sciences version 20 software.Results: Of the 176 patients, 119 (66.9% were males. The mean age of the patients was 44.87±17.21 years. Most were semiskilled or unskilled (111; 63.5% and 29 (16.5% were students. Twenty-six (14.8% had acute kidney injury in the failure stage. Chronic glomerulonephritis, hypertensive nephropathy, and diabetic nephropathy accounted for 45.3%, 23.3%, and 12.1%, respectively, of patients with end-stage renal disease. Only 6.8% of patients could afford hemodialysis beyond 3 months.Conclusion: Sustainability of maintenance hemodialysis is poor in our environment. Efforts should be intensified to improve other modalities of renal replacement therapy, in particular kidney transplantation, which is cost-effective in the long-term. Also, preventive measures such

  10. Children’s psychosocial wellbeing in the context of HIV/AIDS and poverty: a comparative investigation of orphaned and non-orphaned children living in South Africa

    Science.gov (United States)

    2014-01-01

    Background Recent studies have questioned whether orphanhood is primarily associated with key dimensions of psycho-social wellbeing in children living in circumstances of material deprivation and high prevalence of HIV and AIDS. Methods This study uses cross-sectional data from a longitudinal study conducted between 2004-2007 to examine the psychosocial well-being of orphans and non-orphans in the Amajuba District of KwaZulu-Natal, South Africa. Psychosocial wellbeing included an assessment of orphans’ and non orphans’ level of anxiety and depression, affability and resilience. Stratified cluster sampling, based on both school and age, was used to construct a cohort of recent orphans and non-orphans and their households, randomly selected from schools. Results Levels of anxiety and depression, affability and resilience did not differ significantly between orphans and non-orphans, nor did salient household, poverty and caregiver characteristics vary substantially amongst orphans and non-orphans. Multivariate analyses indicated that children’s psychosocial outcomes, when controlling for orphan status and related demographic variables were more strongly influenced by household composition/size, living above or below the poverty threshold and factors associated with the caregiver-child relationship and caregiver health. Conclusions The results muster additional evidence for moving beyond narrow definitions of vulnerability associated exclusively with orphanhood to consider the multitude of material, social and relational factors affecting the psycho-social well-being of children in general who are living in circumstances of poverty and HIV and AIDS. PMID:24938864

  11. Life after Genocide: Mental Health, Education, and Social Support of Orphaned Survivors.

    Science.gov (United States)

    Ng, Lauren C; Ahishakiye, Naphtal; Miller, Donald E; Meyerowitz, Beth E

    Thousands of orphaned survivors of the 1994 Rwandan Genocide against the Tutsi were not only exposed to extraordinarily severe forms of violence, but also many of these children took on the responsibility of caring and providing for other child survivors. This study describes the poverty, educational attainment, social support and mental health of orphaned heads of household (OHH) fourteen years after the genocide, and analyzes how violence exposure during the genocide and post-genocide stressors contributed to symptoms of posttraumatic stress disorder (PTSD) and distress. Participants were 61 members of an OHH community organization who were interviewed in 2002 about their genocide experiences and who provided a follow-up assessment of post-genocide risk factors and PTSD and distress symptoms in 2008. Almost all of the OHH in this study reported low social support, high levels of poverty, and high rates of PTSD and distress symptoms. Lower educational attainment predicted PTSD symptoms and partially mediated the association between exposure to genocide violence and PTSD. Distress was predicted by lack of social support and witnessing family members harmed during the genocide. Results suggest that public health and community efforts to improve educational outcomes and to strengthen and expand social support networks may improve mental health outcomes of OHH.

  12. Implementation of a Sustainable Ventilator-Associated Pneumonia Prevention Protocol in a Pediatric Intensive Care Unit in Managua, Nicaragua.

    Science.gov (United States)

    Chinnadurai, Kelsey; Fenlason, Lindy; Bridges, Brian; Espahbodi, Mana; Chinnadurai, Sivakumar; Blood-Siegfried, Jane

    Ventilator-associated pneumonia (VAP) is a common nosocomial infection in pediatric intensive care units (ICUs). Ventilator-associated pneumonia protocols decrease the incidence of VAP; however, many components of these protocols are not feasible in all settings. This study was done in a large pediatric hospital in Nicaragua. The aim of this study is to implement a sustainable evidence-based VAP protocol, in a different culture, for the purpose of decreasing VAP rates. This quality improvement study used a bidirectional cohort design with the retrospective group as the control and the prospective group as the experimental population. A daily checklist monitored compliance to the implemented protocol in the prospective group. A 2-sided Fisher exact test compared the differences in VAP rates between the 2 populations. During the 90-day implementation period, 123 ventilated patients in 3 separate ICU wings were evaluated, with 99 included in the final analysis. These data for 2014 were compared with the VAP rates recorded for the same time period in 2013. The highest adherence to the protocol was demonstrated by ICU wing 1, with a 90% decrease in VAP rates. No statistical difference in VAP rates was demonstrated by ICU 2, and ICU 3 demonstrated an increase in both patient acuity and VAP rates. Implementation of a sustainable VAP protocol in a pediatric ICU in Nicaragua can reduce the incidence of VAP. Multiple barriers and challenges associated with implementation in a resource-constrained environment are discussed.

  13. Variation in the sustained effects of the communities that care prevention system on adolescent smoking, delinquency, and violence.

    Science.gov (United States)

    Oesterle, Sabrina; Hawkins, J David; Fagan, Abigail A; Abbott, Robert D; Catalano, Richard F

    2014-04-01

    Communities That Care (CTC) is a universal, science-based community prevention system designed to reduce risk, enhance protection, and prevent adolescent health and behavior problems community wide. CTC has been found to have sustained effects on cigarette use and delinquent and violent behaviors in grade 10 in a panel of 4,407 students followed from fifth grade in a community randomized trial. It is important to test variation in the effects of this prevention system designed to be universal to understand for whom it is most effective and whether it fails to produce change or leads to iatrogenic effects for certain categories of individuals. The present study examined variation in the sustained effects of CTC on tenth-grade cigarette use and delinquent and violent behaviors. Interaction analyses suggest that the effect of CTC did not differ between those who had high levels of community-targeted risk factors at baseline or had already engaged in substance use, delinquency, or violence at baseline versus those who had not. Although CTC reduced the prevalence of both girls' and boys' problem behaviors, the effect on delinquency was marginally (p = 0.08) larger for boys than for girls.

  14. Increasing the Frequency and Timeliness of Pain Assessment and Management in Long-Term Care: Knowledge Transfer and Sustained Implementation

    Directory of Open Access Journals (Sweden)

    Thomas Hadjistavropoulos

    2016-01-01

    Full Text Available Background. Although feasible protocols for pain assessment and management in long-term care (LTC have been developed, these have not been implemented on a large-scale basis. Objective. To implement a program of regular pain assessment in two LTC facilities, using implementation science principles, and to evaluate the process and success of doing so. Methods. The implementation protocol included a pain assessment workshop and the establishment of a nurse Pain Champion. Quality indicators were tracked before and after implementation. Focus groups and interviews with staff were also conducted. Results. The implementation effort was successful in increasing and regularizing pain assessments. This was sustained during the follow-up period. Staff members reported enthusiasm about the protocol at baseline and positive results following its implementation. Despite the success in increasing assessments, we did not identify changes in the percentages of patients reported as having moderate-to-severe pain. Discussion. It is our hope that our feasibility demonstration will encourage more facilities to improve their pain assessment/management practices. Conclusions. It is feasible to implement regular and systematic pain assessment in LTC. Future research should focus on ensuring effective clinical practices in response to assessment results, and determination of longer-term sustainability.

  15. Potentially traumatic experiences and sexual health among orphaned and separated adolescents in five low- and middle-income countries.

    Science.gov (United States)

    Gray, Christine L; Whetten, Kathryn; Messer, Lynne C; Whetten, Rachel A; Ostermann, Jan; O'Donnell, Karen; Thielman, Nathan M; Pence, Brian W

    2016-07-01

    Orphans and separated children (OSC) are a vulnerable population whose numbers are increasing, particularly in sub-Saharan Africa and Asia. Over 153 million children worldwide have lost one or both parents, including 17 million orphaned by AIDS, and millions more have been separated from their parents. As younger orphans enter adolescence, their sexual health and HIV-related risk behaviors become key considerations for their overall health. Importantly, their high prevalence of exposure to potentially traumatic events (PTEs) may put OSC at additional risk for adverse sexual health outcomes. The Positive Outcomes for Orphans study followed OSC randomly sampled from institution-based care and from family-based care, as well as a convenience sample of non-OSC, at six sites in five low-and middle-income countries. This analysis focused on the 90-month follow-up, during which adolescents 16 and older were assessed for sexual health, including age at sexual debut, past-year sex, past-year condom use, and perceptions of condom use. We specifically examined the relationship between PTEs and sexual health outcomes. Of the 1258 OSC and 138 non-OSC assessed, 11% reported ever having sex. Approximately 6% of participants reported recent sex and 5% reported having recent unprotected sex. However, 70% of those who had recent sex reported that they did not use a condom every time, and perceptions of condom use tended to be unfavorable for protection against sexual risk behavior. Nearly all (90%) of participants reported experiencing at least one lifetime PTE. For those who experienced "any" PTE, we found increased prevalence of recent sex (PR = 1.39 [0.47, 4.07]) and of recent unprotected sex (PR = 3.47 [0.60, 19.91]). This study highlights the need for caregivers, program managers, and policymakers to promote condom use for sexually active OSC and identify interventions for trauma support services. Orphans living in family-based care may also be particularly vulnerable

  16. M-health adoption and sustainability prognosis from a care givers’ and patients’ perspective

    CSIR Research Space (South Africa)

    Hwabamungu, B

    2010-10-01

    Full Text Available /AIDS Lab results access and medical history report; Nutritional planning and medication reminder Peru, Colecta-PALM: ART adherence information and patient?s behavioral actions that is potential to wide spread of HIV/AIDS South Africa, Cell... and the development of mobile phone-based applications for health care in developing countries such as South Africa, India, Rwanda, Peru, Uganda, etc [39]. These applications fall in the following utilisation areas: Education and Awareness, Remote Data Collection...

  17. Primary-care-based social prescribing for mental health: an analysis of financial and environmental sustainability.

    Science.gov (United States)

    Maughan, Daniel L; Patel, Alisha; Parveen, Tahmina; Braithwaite, Isobel; Cook, Jonathan; Lillywhite, Rob; Cooke, Matthew

    2016-03-01

    Aim To assess the effects of a social prescribing service development on healthcare use and the subsequent economic and environmental costs. Social prescribing services for mental healthcare create links with support in the community for people using primary care. Social prescribing services may reduce future healthcare use, and therefore reduce the financial and environmental costs of healthcare, by providing structured psychosocial support. The National Health Service (NHS) is required to reduce its carbon footprint by 80% by 2050 according to the Climate Change Act (2008). This study is the first of its kind to analyse both the financial and environmental impacts associated with healthcare use following social prescribing. The value of this observational study lies in its novel methodology of analysing the carbon footprint of a service at the primary-care level. An observational study was carried out to assess the impact of the service on the financial and environmental impacts of healthcare use. GP appointments, psychotropic medications and secondary-care referrals were measured. Findings Results demonstrate no statistical difference in the financial and carbon costs of healthcare use between groups. Social prescribing showed a trend towards reduced healthcare use, mainly due to a reduction in secondary-care referrals compared with controls. The associations found did not achieve significance due to the small sample size leading to a large degree of uncertainty regarding differences. This study demonstrates that these services are potentially able to pay for themselves through reducing future healthcare costs and are effective, low-carbon interventions, when compared with cognitive behavioral therapy or antidepressants. This is an important finding in light of Government targets for the NHS to reduce its carbon footprint by 80% by 2050. Larger studies are required to investigate the potentials of social prescribing services further.

  18. Integration and sustainability of alcohol screening, brief intervention, and pharmacotherapy in primary care settings.

    Science.gov (United States)

    Ornstein, Steven M; Miller, Peter M; Wessell, Andrea M; Jenkins, Ruth G; Nemeth, Lynne S; Nietert, Paul J

    2013-07-01

    At-risk drinking and alcohol use disorders are common in primary care and may adversely affect the treatment of patients with diabetes and/or hypertension. The purpose of this article is to report the impact of dissemination of a practice-based quality improvement approach (Practice Partner Research Network-Translating Research into Practice [PPRNet-TRIP]) on alcohol screening, brief intervention for at-risk drinking and alcohol use disorders, and medications for alcohol use disorders in primary care practices. Nineteen primary care practices from 15 states representing 26,005 patients with diabetes and/or hypertension participated in a group-randomized trial (early intervention vs. delayed intervention). The 12-month intervention consisted of practice site visits for academic detailing and participatory planning and network meetings for "best practice" dissemination. At the end of Phase 1, eligible patients in early-intervention practices were significantly more likely than patients in delayed-intervention practices to have been screened (odds ratio [OR] = 3.30, 95% CI [1.15, 9.50]) and more likely to have been provided a brief intervention (OR = 6.58, 95% CI [1.69, 25.7]. At the end of Phase 2, patients in delayed-intervention practices were more likely than at the end of Phase 1 to have been screened (OR = 5.18, 95% CI [4.65, 5.76]) and provided a brief intervention (OR = 1.80, 95% CI [1.31, 2.47]). Early-intervention practices maintained their screening and brief intervention performance during Phase 2. Medication for alcohol use disorders was prescribed infrequently. PPRNet-TRIP is effective in improving and maintaining improvement in alcohol screening and brief intervention for patients with diabetes and/or hypertension in primary care settings.

  19. Shining a light in the black box of orphan drug pricing

    Science.gov (United States)

    2014-01-01

    Background The pricing mechanism of orphan drugs appears arbitrary and has been referred to as a “black box”. Therefore, the aim of this study is to investigate how drug- and disease-specific variables relate to orphan drug prices. Additionally, we aim to explore if certain country-specific pricing and reimbursement policies affect the price level of orphan drugs. Methods Annual treatment costs per indication per patient were calculated for 59 orphan drugs with a publicly available price in Belgium, the Netherlands, Czech Republic, France, Italy and the United Kingdom. A multiple linear regression model was built with 14 drug- and disease-specific variables. A Mann-Whitney U test was used to explore whether there is a correlation between annual treatment costs of orphan drugs across countries with different pricing and reimbursement policies. Results Repurposed orphan drugs, orally administered orphan drugs or orphan drugs for which an alternative treatment is available are associated with lower annual treatment costs. Orphan drugs with multiple orphan indications, for chronic treatments or for which an improvement in overall survival or quality-of-life has been demonstrated, are associated with higher annual treatment costs. No association was found between annual treatments cost of orphan drugs across countries and the different pricing and reimbursement systems. Conclusions This study has shown that prices of orphan drugs are influenced by factors such as the availability of an alternative drug treatment, repurposing, etc. Current debate about the affordability of orphan drugs highlights the need for more transparency in orphan drug price setting. PMID:24767472

  20. Novel treatments for rare rheumatologic disorders: analysis of the impact of 30?years of the US orphan drug act

    OpenAIRE

    Lutz, Thomas; Lampert, Anette; Hoffmann, Georg F.; Ries, Markus

    2016-01-01

    Background: Rare rheumatologic diseases are a heterogeneous group of conditions associated with high morbidity. As a whole group, rare rheumatologic diseases afflict millions of people demanding for effective therapies. Therefore, we analyzed the impact of the US Orphan Drug Act on the development of anti-rheumatic orphan drugs. Methods: Analysis of the FDA database for orphan drug designations. Results: In the last three decades, out of 77 orphan drug designations, 14 orphan drug approva...

  1. Targeting AIDS orphans and child-headed households? A perspective from national surveys in South Africa, 1995-2005.

    Science.gov (United States)

    Richter, Linda M; Desmond, Chris

    2008-10-01

    In the HIV and AIDS sphere, children remain on the margins with respect to advocacy, prevention, treatment and care. Moreover, concern is generally limited to specific categories of children, most especially children living with HIV, orphaned children and child-headed households. Excluded from view are the very large numbers of children affected by generalized HIV/AIDS epidemics, now in advanced stages, in already impoverished countries in southern Africa. In this paper, we use information from comparable national household surveys in South Africa, in five waves between 1995 and 2005, to examine the impact of HIV and AIDS on children and on the structure of the households in which they find themselves. The question posed is whether it is appropriate to target orphans and child-headed households in this context. The data indicate that orphaning, particularly loss of a mother, tripled during this period, as is to be expected from rising adult mortality. Though they remain a small proportion, child-only households also rose markedly during this time. However, difficult as their situation is, neither orphans nor child-only households appear to be the worst-off children, at least from the point of view of reported sources of financial support and per capita monthly expenditure. Households headed by single adults and young adults are economically vulnerable groups not yet included in efforts to support affected children and families. Poverty is a pitiless backdrop to the AIDS epidemic and needs to be at the heart of strategies to address the needs of all vulnerable children in hard-hit communities.

  2. Insurance Companies’ Perspectives on the Orphan Drug Pipeline

    Science.gov (United States)

    Handfield, Robert; Feldstein, Josh

    2013-01-01

    Background Rare diseases are of increasing concern to private and public healthcare insurance plans. Largely neglected by manufacturers before the 1983 passing of the Orphan Drug Act (ODA), orphan drugs have become a commercialization target of steadily increasing importance to the healthcare industry. The ODA mandates the coverage of rare diseases, which are defined in research communities as diseases that are so infrequent that there is no reasonable expectation of a drugmaker recovering the cost of developing that drug. Objectives To determine the views of leading commercial US payers regarding providing access to and coverage for orphan drugs; to assess whether and to what degree cost-effectiveness analysis (CEA) is viewed by payers as relevant to rare disease coverage. Methods The study sample was identified through a call for action sent by America's Health Insurance Plans to its members, resulting in 4 interviews conducted and 3 completed surveys from a total of 7 companies. These 7 US health insurance companies represent approximately 75% of the US private insurance market by revenue and include approximately 157 million covered lives (using self-reported data from insurance companies). Representatives of 3 companies responded to the survey, and representatives of 4 companies were interviewed via the phone. The interviews were conducted with subject matter experts at each company and included 2 senior vice presidents of a pharmacy program, 1 chief medical director, and 1 head of pharmacoeconomics. The surveys were completed by 1 vice president of clinical pharmacy strategy, 1 chief pharmacy director, and 1 medical director. Results Based on the responses in this study, approximately 67% of US private insurance companies are concerned about orphan drugs, but only approximately 17% have developed meaningful strategies for addressing the cost of orphan drugs. Of the companies who do have such a strategy, 100% are unsure how to determine the best economic

  3. Insurance companies' perspectives on the orphan drug pipeline.

    Science.gov (United States)

    Handfield, Robert; Feldstein, Josh

    2013-11-01

    Rare diseases are of increasing concern to private and public healthcare insurance plans. Largely neglected by manufacturers before the 1983 passing of the Orphan Drug Act (ODA), orphan drugs have become a commercialization target of steadily increasing importance to the healthcare industry. The ODA mandates the coverage of rare diseases, which are defined in research communities as diseases that are so infrequent that there is no reasonable expectation of a drugmaker recovering the cost of developing that drug. To determine the views of leading commercial US payers regarding providing access to and coverage for orphan drugs; to assess whether and to what degree cost-effectiveness analysis (CEA) is viewed by payers as relevant to rare disease coverage. The study sample was identified through a call for action sent by America's Health Insurance Plans to its members, resulting in 4 interviews conducted and 3 completed surveys from a total of 7 companies. These 7 US health insurance companies represent approximately 75% of the US private insurance market by revenue and include approximately 157 million covered lives (using self-reported data from insurance companies). Representatives of 3 companies responded to the survey, and representatives of 4 companies were interviewed via the phone. The interviews were conducted with subject matter experts at each company and included 2 senior vice presidents of a pharmacy program, 1 chief medical director, and 1 head of pharmacoeconomics. The surveys were completed by 1 vice president of clinical pharmacy strategy, 1 chief pharmacy director, and 1 medical director. Based on the responses in this study, approximately 67% of US private insurance companies are concerned about orphan drugs, but only approximately 17% have developed meaningful strategies for addressing the cost of orphan drugs. Of the companies who do have such a strategy, 100% are unsure how to determine the best economic assessment tools to control orphan drug

  4. Palliative care and other physicians' knowledge, attitudes and practice relating to the law on withholding/withdrawing life-sustaining treatment: Survey results.

    Science.gov (United States)

    Cartwright, Colleen Maria; White, Ben P; Willmott, Lindy; Williams, Gail; Parker, Malcolm Holbrook

    2016-02-01

    To effectively care for people who are terminally ill, including those without decision-making capacity, palliative care physicians must know and understand the legal standing of Advance Care Planning in their jurisdiction of practice. This includes the use of advance directives/living wills and substitute decision-makers who can legally consent to or refuse treatment if there is no valid advance directive. This study aimed to investigate the knowledge, attitudes and practices of medical specialists most often involved in end-of-life care in relation to the law on withholding/withdrawing life-sustaining treatment from adults without decision-making capacity. A pre-piloted survey was posted to specialists in palliative, emergency, geriatric, renal and respiratory medicine; intensive care; and medical oncology in three Australian States. Surveys were analysed using SPSS 20 and SAS 9.3. The overall response rate was 32% (867/2702) - 52% from palliative care specialists. Palliative care specialists and geriatricians had significantly more positive attitudes towards the law (χ42(2) = 94.352; p life-sustaining treatment law (χ7(2) = 30.033; p decisions, expressed through Advance Care Planning, are respected to the maximum extent possible within the law, thereby according with the principles and philosophy of palliative care. It is also essential to protect health professionals from legal action resulting from unauthorised provision or cessation of treatment. © The Author(s) 2015.

  5. An estimated carbon footprint of NHS primary dental care within England. How can dentistry be more environmentally sustainable?

    Science.gov (United States)

    Duane, B; Lee, M Berners; White, S; Stancliffe, R; Steinbach, I

    2017-10-27

    Introduction National Health Service (NHS) England dental teams need to consider from a professional perspective how they can, along with their NHS colleagues, play their part in reducing their carbon emissions and improve the sustainability of the care they deliver. In order to help understand carbon emissions from dental services, Public Health England (PHE) commissioned a calculation and analysis of the carbon footprint of key dental procedures.Methods Secondary data analysis from Business Services Authority (BSA), Health and Social Care Information Centre (HSCIC) (now called NHS Digital, Information Services Division [ISD]), National Association of Specialist Dental Accountants (NASDA) and recent Scottish papers was undertaken using a process-based and environmental input-output analysis using industry established conversion factors.Results The carbon footprint of the NHS dental service is 675 kilotonnes carbon dioxide equivalents (CO2e). Examinations contributed the highest proportion to this footprint (27.1%) followed by scale and polish (13.4%) and amalgam/composite restorations (19.3%). From an emissions perspective, nearly 2/3 (64.5%) of emissions related to travel (staff and patient travel), 19% procurement (the products and services dental clinics buy) and 15.3% related to energy use.Discussion The results are estimates of carbon emissions based on a number of broad assumptions. More research, education and awareness is needed to help dentistry develop low carbon patient pathways.

  6. Screening for Mental Health Problems: Addressing the Base Rate Fallacy for a Sustainable Screening Program in Integrated Primary Care.

    Science.gov (United States)

    Lavigne, John V; Feldman, Marissa; Meyers, Kathryn Mendelsohn

    2016-11-01

    The Affordable Care Act has stimulated interest in screening for psychological problems in primary care. Given the scale with which screening might occur, the implications of a problem known as the base rate fallacy need to be considered. The concepts of sensitivity and specificity, positive and negative predictive value, and the base rate fallacy are discussed. The possibility that a screening program may not improve upon random selection is reviewed, as is the possibility that sequential screening might be useful. Developing effective screening programs for pediatric mental health problems is highly desirable, and properly addressing the high rate of false positives may improve the likelihood that such programs can be sustained. Consideration needs to be given to the use of sequential screening, which has both advantages and disadvantages, depending upon the type of problem to be screened for and the availability of resources for follow-up evaluations. © The Author 2016. Published by Oxford University Press on behalf of the Society of Pediatric Psychology. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

  7. Sustained increase in resident meal time hand hygiene through an interdisciplinary intervention engaging long-term care facility residents and staff.

    Science.gov (United States)

    O'Donnell, Marguerite; Harris, Tony; Horn, Terancita; Midamba, Blondelle; Primes, Vickie; Sullivan, Nancy; Shuler, Rosalyn; Zabarsky, Trina F; Deshpande, Abhishek; Sunkesula, Venkata C K; Kundrapu, Sirisha; Donskey, Curtis J

    2015-02-01

    Hand hygiene by patients may prevent acquisition and dissemination of health care-associated pathogens, but limited efforts have been made to engage patients in hand hygiene interventions. In a long-term care facility, we found that residents were aware of the importance of hand hygiene, but barriers, such as inaccessible products or difficult to use products, limited compliance. A dramatic and sustained improvement in meal time hand hygiene was achieved through engagement of staff and residents. Published by Elsevier Inc.

  8. Can curative or life-sustaining treatment be withheld or withdrawn? The opinions and views of Indian palliative-care nurses and physicians.

    Science.gov (United States)

    Gielen, Joris; Bhatnagar, Sushma; Mishra, Seema; Chaturvedi, Arvind K; Gupta, Harmala; Rajvanshi, Ambika; Van den Branden, Stef; Broeckaert, Bert

    2011-02-01

    Decisions to withdraw or withhold curative or life-sustaining treatment can have a huge impact on the symptoms which the palliative-care team has to control. Palliative-care patients and their relatives may also turn to palliative-care physicians and nurses for advice regarding these treatments. We wanted to assess Indian palliative-care nurses and physicians' attitudes towards withholding and withdrawal of curative or life-sustaining treatment. From May to September 2008, we interviewed 14 physicians and 13 nurses working in different palliative-care programmes in New Delhi, using a semi-structured questionnaire. For the interviews and analysis of the data we followed Grounded-Theory methodology. Withholding a curative or life-sustaining treatment which may prolong a terminal cancer patient's life with a few weeks but also has severe side-effects was generally considered acceptable by the interviewees. The majority of the interviewees agreed that life-sustaining treatments can be withdrawn in a patient who is in an irreversible coma. The palliative-care physicians and nurses were of the opinion that a patient has the right to refuse life-saving curative treatment. While reflecting upon the ethical acceptability of withholding or withdrawal of curative or life-sustaining treatment, the physicians and nurses were concerned about the whole patient and other people who may be affected by the decision. They were convinced they can play an important advisory role in the decision-making process. While deciding about the ethical issues, the physicians and nurses do not restrict their considerations to the physical aspects of the disease, but also reflect upon the complex wider consequences of the treatment decisions.

  9. Sustaining hope and life courage in patients undergoing ovarian cancer surgery - the impact of care

    DEFF Research Database (Denmark)

    Seibaek, L; Delmar, C; Hounsgaard, L

    2018-01-01

    body and mind," where findings dealt with personal reflections and experiences in relation to the subthemes: "Experiencing discomfort," "The impact of care" and "Comfort and hope." The women's general health condition became impacted not only by their ovarian cancer disease but also by the treatment......Ovarian cancer is the leading cause of death from a gynaecological malignancy in the Western World. To explore if experiences of physical comfort influenced hope and life courage during final diagnosis and early treatment, qualitative research interviews were performed with women undergoing surgery...... for ovarian cancer. By applying a phenomenological-hermeneutic methodology, the findings were systematically identified, put into meaning-structures, interpreted and critically discussed. The empirical material constituted a main theme concerning "Hope and life courage are created in the interplay between...

  10. Orphaned female elephant social bonds reflect lack of access to mature adults.

    Science.gov (United States)

    Goldenberg, Shifra Z; Wittemyer, George

    2017-10-31

    Compensatory social behavior in nonhuman animals following maternal loss has been documented, but understanding of how orphans allocate bonding to reconstruct their social networks is limited. Successful social integration may be critical to survival and reproduction for highly social species and, therefore, may be tied to population persistence. We examined the social partners involved in affiliative interactions of female orphans and non-orphans in an elephant population in Samburu, northern Kenya that experienced heightened adult mortality driven by drought and intense ivory poaching. We contrasted partners across different competitive contexts to gain insight to the influence of resource availability on social interactions. Though the number of partners did not differ between orphans and non-orphans, their types of social partners did. Orphans interacted with sisters and matriarchs less while feeding than did non-orphans, but otherwise their affiliates were similar. While resting under spatially concentrated shade, orphans had markedly less access to mature adults but affiliated instead with sisters, bulls, and age mates. Orphan propensity to strengthen bonds with non-dominant animals appears to offer routes to social integration following maternal loss, but lack of interaction with adult females suggests orphans may experience decreased resource access and associated fitness costs in this matriarchal society.

  11. Drug development for orphan diseases in the context of personalized medicine.

    Science.gov (United States)

    Brewer, George J

    2009-12-01

    Orphan diseases are diseases that are found in less than 200,000 patients in the United States, which is the cutoff point for the number of patients for a drug to be profitable. Because many thousands of orphan diseases exist in the aggregate (about 20 to 30 million Americans have orphan diseases), these patients are disenfranchised from drug development by the pharmaceutical industry. Orphan drugs are a large part of personalized medicine. The orphan diseases are often so rare that a physician may observe only 1 case a year or less. So proper treatment is a personalized encounter between doctor and patient. Academic physician-scientists have tried to fill this therapy vacuum by working on developing orphan drugs. But many disincentives are involved, which include career disincentives, lack of funding, and the multiple areas of expertise that are required. Positive developments include formation of the National Organization for Rare Diseases, the Orphan Drug Act, the development of a grant program to fund orphan drug development, the formation of the National Institutes of Health Office of Rare Diseases, and the passage of orphan drug legislation by other countries. Progress has increased, but the 300 orphan drugs and devices approved in the last 25 years are still only a drop in the bucket compared with the many thousands of orphan diseases. I believe we must do better. I present my own 2 examples of the positive and the negative aspects of orphan drug development, and I end this article by giving recommendations on how we might succeed both in developing more orphan drugs and in rescuing the pharmaceutical industry from its impending economic collapse.

  12. Access to Orphan Drugs: A Comprehensive Review of Legislations, Regulations and Policies in 35 Countries.

    Science.gov (United States)

    Gammie, Todd; Lu, Christine Y; Babar, Zaheer Ud-Din

    2015-01-01

    To review existing regulations and policies utilised by countries to enable patient access to orphan drugs. A review of the literature (1998 to 2014) was performed to identify relevant, peer-reviewed articles. Using content analysis, we synthesised regulations and policies for access to orphan drugs by type and by country. Fifty seven articles and 35 countries were included in this review. Six broad categories of regulation and policy instruments were identified: national orphan drug policies, orphan drug designation, marketing authorization, incentives, marketing exclusivity, and pricing and reimbursement. The availability of orphan drugs depends on individual country's legislation and regulations including national orphan drug policies, orphan drug designation, marketing authorization, marketing exclusivity and incentives such as tax credits to ensure research, development and marketing. The majority of countries (27/35) had in place orphan drug legislation. Access to orphan drugs depends on individual country's pricing and reimbursement policies, which varied widely between countries. High prices and insufficient evidence often limit orphan drugs from meeting the traditional health technology assessment criteria, especially cost-effectiveness, which may influence access. Overall many countries have implemented a combination of legislations, regulations and policies for orphan drugs in the last two decades. While these may enable the availability and access to orphan drugs, there are critical differences between countries in terms of range and types of legislations, regulations and policies implemented. Importantly, China and India, two of the largest countries by population size, both lack national legislation for orphan medicines and rare diseases, which could have substantial negative impacts on their patient populations with rare diseases.

  13. Parenting AIDS-orphaned grandchildren: experiences from ...

    African Journals Online (AJOL)

    Gender and Behaviour ... The challenges they faced in caring for their grandchildren were identified as the following: recurrent experiences of loss and grief, lack of social support, fear of stigmatization, financial constraints, mental health and physical strain, difficulty in acquiring state social grants, emotional distress, the ...

  14. Developing a Sustainable Model of Oral Health Care for Disadvantaged Aboriginal People Living in Rural and Remote Communities in NSW, Using Collective Impact Methodology.

    Science.gov (United States)

    Gwynne, Kylie; Irving, Michelle J; McCowen, Debbie; Rambaldini, Boe; Skinner, John; Naoum, Steve; Blinkhorn, Anthony

    2016-02-01

    A sustainable model of oral health care for disadvantaged Aboriginal people living in rural and remote communities in New South Wales was developed using collective impact methodology. Collective impact is a structured process which draws together organizations to develop a shared agenda and design solutions which are jointly resourced, measured and reported upon.

  15. Promoting Children's Sustainable Access to Early Schooling in Africa: Reflections on the Roles of Parents in Their Children's Early Childhood Care and Education

    Science.gov (United States)

    Ngwaru, Jacob Marriote

    2014-01-01

    Sub-Saharan Africa has predominantly rural populations unable to offer children sustainable access to early literacy and childhood care and education. Children's literacy development starts very early in life through participation and experiences in the home and preschool. My research in rural Zimbabwe, Kenya, Uganda, and Tanzania shows that the…

  16. Achieving and sustaining ventilator-associated pneumonia-free time among intensive care units (ICUs): evidence from the Keystone ICU Quality Improvement Collaborative.

    Science.gov (United States)

    Matar, Dany S; Pham, Julius C; Louis, Thomas A; Berenholtz, Sean M

    2013-07-01

    Our retrospective analysis of the Michigan Keystone intensive care unit (ICU) collaborative demonstrated that adult ICUs could achieve and sustain a zero rate of ventilator-associated pneumonia (VAP) for a considerable number of ventilator and calendar months. Moreover, the results highlight the importance of adjustment for ventilator-days before comparing VAP-free time among ICUs.

  17. Sustaining the Employment of Early Childhood Teachers in Long Day Care: A Case for Robust Hope, Critical Imagination and Critical Action

    Science.gov (United States)

    Sumsion, Jennifer

    2007-01-01

    This article is concerned with the sustainability of the employment of qualified teachers in the Australian long day care sector in the light of the dual pressures of poor pay and conditions, relative to schools, and the commercialisation of the sector and consequent vested interests in containing staffing costs. Eschewing the usual, narrow focus…

  18. Limitation of life-sustaining treatment in severe trauma in the elderly after admission to an intensive care unit.

    Science.gov (United States)

    Peñasco, Y; González-Castro, A; Rodríguez Borregán, J C; Ortiz-Lasa, M; Jáuregui Solórzano, R; Sánchez Arguiano, M J; Escudero Acha, P

    2017-10-01

    To analyze the factors associated to limitation of life-sustaining treatment (LLST) measures in elderly patients admitted to an intensive care unit (ICU) due to trauma. A retrospective, descriptive, observational study was carried out. ICU. A total of 149 patients aged 65 years or older admitted to the ICU due to trauma. Hospital mortality, the decision to limit life-sustaining treatment and the factors associated to these measures were analyzed. None. The mean patient age was 76.3±6.36 years. The average APACHE II and ISS scores were 15.9±7.4 and 19.6±11.4 points, respectively. LLST were used in 37 patients (24.8%). Factors associated to the use of these measures were patient age (OR 1.16; 95% CI 1.08 to 1.25], APACHE II score (OR 1.11; 95% CI 1.05-1.67), ISS score (OR 1.03; 95% CI 1.01 to 1.06), admission due to neurological impairment (OR 19.17; 95% CI 2.33 to 157.83) and traumatic brain injury (OR 2.89; 95% CI 1.05 to 7.96). LLST is frequently established in elderly patients admitted to the ICU due to trauma, and is associated to hospital mortality. Factors associated with the use of these measures are patient age, higher APACHE II and ISS scores, admission due to neurological impairment, and the presence of head injuries. Copyright © 2017 Elsevier España, S.L.U. y SEMICYUC. All rights reserved.

  19. [European ordinance on orphan drugs: changes and threats].

    Science.gov (United States)

    Linthorst, G E; Hollak, C E M

    2003-01-25

    The Orphan Drugs Act has been officially implemented in all countries of the European Union since the year 2000. The Act aims to promote the development of treatments for rare diseases (prevalence Drugs already in use can also be registered as orphan drugs for a specific indication. In addition to this, European approval for the market authorization of new drugs does not automatically mean that the costs of the drug are reimbursed within the Netherlands, whereas that might well be the case in other EU countries. However, a faster procedure with respect to the reimbursement of drug costs in the Netherlands may not lead to the responsibilities for the carrying out of additional trials being transferred to those handling the treatment.

  20. Direct-to-Consumer Genetic Testing and Orphan Drug Development.

    Science.gov (United States)

    Mason, Matthew; Levenson, James; Quillin, John

    2017-08-01

    Since the introduction of the Orphan Drug Act (ODA) in 1983, orphan drug approvals in the United States have jumped from consumer (DTC) genetic testing companies. This emerging trend is the subject of this article, which begins by considering how rare-disease drugs are regulated and the rising interest in nonclinical genetic testing. It then outlines how DTC companies analyze DNA and how their techniques benefit researchers and drug developers. Then, after an overview of the current partnerships between DTCs and drug developers, it examines concerns about privacy and cost brought up by these partnerships. The article concludes by contrasting the enormous positive potential of DTC-pharma relationships and their concomitant dangers, especially to consumer privacy and cost to the healthcare system.

  1. Orphans in Three Sahelian Countries: Exploratory Analyses from Census Data

    Directory of Open Access Journals (Sweden)

    Richard Marcoux

    2010-12-01

    Full Text Available Important investments in Africa have reduced slightly the levels child mortality but life expectancy still very low. The number of children without surviving biological parents is increasing and orphans are becoming an important social problem. Because Sahelian societies are mostly patriarchal, becoming fatherless or motherless will have different effects on the well being of the child. This paper examines the levels and trends of the survival status of the parents and then, living arrangements of orphans. We describe characteristics of these children with a special focus on education and economic activities. The paper uses the censuses from Chad, Niger and Senegal made available by the African Census Analysis Project (ACAP held at University of Pennsylvania. These countries collected information on survival status of each biological parent to estimate adult mortality but the potential of this information for research on child well-being is rarely exploited.

  2. Orphans in Three Sahelian Countries: Exploratory Analyses from Census Data.

    Science.gov (United States)

    Marcoux, Richard; Noumbissi, Amadou; Zuberi, Tukufu

    2010-01-01

    Important investments in Africa have reduced slightly the levels child mortality but life expectancy still very low. The number of children without surviving biological parents is increasing and orphans are becoming an important social problem. Because Sahelian societies are mostly patriarchal, becoming fatherless or motherless will have different effects on the well being of the child. This paper examines the levels and trends of the survival status of the parents and then, living arrangements of orphans. We describe characteristics of these children with a special focus on education and economic activities. The paper uses the censuses from Chad, Niger and Senegal made available by the African Census Analysis Project (ACAP) held at University of Pennsylvania. These countries collected information on survival status of each biological parent to estimate adult mortality but the potential of this information for research on child well-being is rarely exploited.

  3. Transient Survey Rates for Orphan Afterglows from Compact Merger Jets

    OpenAIRE

    Lamb, Gavin P; Tanaka, Masaomi; Kobayashi, Shiho

    2017-01-01

    Orphan afterglows from short $\\gamma$-ray bursts (GRB) are potential candidates for electromagnetic (EM) counterpart searches to gravitational wave (GW) detected neutron star or neutron star black hole mergers. Various jet dynamical and structure models have been proposed that can be tested by the detection of a large sample of GW-EM counterparts. We make predictions for the expected rate of optical transients from these jet models for future survey telescopes, without a GW or GRB trigger. A ...

  4. When a foreign adolescent orphan refuses to be treated: Considerations on a clinical case.

    Science.gov (United States)

    Clerici, Carlo Alfredo; Casiraghi, Giovanna; Veneroni, Laura; Pecori, Emilia; Proserpio, Tullio; Gandola, Lorenza; Massimino, Maura

    2015-12-01

    Providing medical treatment for unaccompanied foreign minors can prove particularly demanding when a patient is not fully compliant. This report describes the case of a 13-year-old boy from Sub-Saharan Africa brought to Italy to receive treatment for a neoplasm. Right from the start, he showed strong oppositional reactions, with aggressive and self-harming behavior. This made it necessary to activate various different psychological, psychiatric, and social-support resources, and to adapt the proposed treatments to the patient's willingness and ability to cooperate. Here we outline the assessments and actions (also from the economic and organizational standpoint) that need to be implemented in any scheme to bring young foreign orphans to Italy for specialist medical care.

  5. The paediatric rheumatologist and orphan disease - a story without happy ending.

    Science.gov (United States)

    Roszkiewicz, Justyna; Biernacka-Zielińska, Małgorzata; Smolewska, Elżbieta

    2016-01-01

    Orphan diseases are not a common challenge in the everyday practice of the rheumatologist. Despite their extremely rare occurrence one of the patients under our care developed one of them - neuronal ceroid lipofuscinosis, the most frequent neurodegenerative disease observed in the paediatric population. We report a case of 2-year-old girl diagnosed with oligoarticular form of juvenile idiopathic arthritis treated in our Department with steroids and methotrexate and staying in the stage of disease remission. During routine checkups at Outpatient Clinic we observed progressive deterioration of girls neurological condition resulting in ataxia, gait disturbances with no rheumatological cause behind and speech impairment. The appearance of the symptoms was accompanied by frequent episodes of epileptic seizures, with little clinical improvement on combined antiepileptic treatment. Magnetic resonance imaging that we performed showed a picture highly suggestive of neuronal ceroid lipofuscinosis - atrophy of the patients cerebrum and cerebellum. Genetic testing conducted resulted in the diagnosis of late infantile neuronal ceroid lipofuscinosis (LINCL).

  6. Estimating the budget impact of orphan drugs in Sweden and France 2013-2020.

    Science.gov (United States)

    Hutchings, Adam; Schey, Carina; Dutton, Richard; Achana, Felix; Antonov, Karolina

    2014-02-13

    The growth in expenditure on orphan medicinal products (OMP) across Europe has been identified as a concern. Estimates of future expenditure in Europe have suggested that OMPs could account for a significant proportion of total pharmaceutical expenditure in some countries, but few of these forecasts have been well validated. This analysis aims to establish a robust forecast of the future budget impact of OMPs on the healthcare systems in Sweden and France. A dynamic forecasting model was created to estimate the budget impact of OMPs in Sweden and France between 2013 and 2020. The model used historical data on OMP designation and approval rates to predict the number of new OMPs coming to the market. Average OMP sales were estimated for each year post-launch by regression analysis of historical sales data. Total forecast sales were compared with expected sales of all pharmaceuticals in each country to quantify the relative budget impact. The model predicts that by 2020, 152 OMPs will have marketing authorization in Europe. The base case OMP budget impacts are forecast to grow from 2.7% in Sweden and 3.2% in France of total drug expenditure in 2013 to 4.1% in Sweden and 4.9% in France by 2020. The principal driver of expenditure growth is the number of new OMPs obtaining OMP designation. This is tempered by the slowing success rate for new approvals and the loss of intellectual property protection on existing orphan medicines. Given the forward-looking nature of the analysis, uncertainty exists around model parameters and sensitivity analysis found peak year budget impact varying between 2% and 11%. The budget impact of OMPs in Sweden and France is likely to remain sustainable over time and a relatively small proportion of total pharmaceutical expenditure. This forecast could be affected by changes in the success rate for OMP approvals, average cost of OMPs, and the type of companies developing OMPs.

  7. Estimating the budget impact of orphan drugs in Sweden and France 2013–2020

    Science.gov (United States)

    2014-01-01

    Background The growth in expenditure on orphan medicinal products (OMP) across Europe has been identified as a concern. Estimates of future expenditure in Europe have suggested that OMPs could account for a significant proportion of total pharmaceutical expenditure in some countries, but few of these forecasts have been well validated. This analysis aims to establish a robust forecast of the future budget impact of OMPs on the healthcare systems in Sweden and France. Methods A dynamic forecasting model was created to estimate the budget impact of OMPs in Sweden and France between 2013 and 2020. The model used historical data on OMP designation and approval rates to predict the number of new OMPs coming to the market. Average OMP sales were estimated for each year post-launch by regression analysis of historical sales data. Total forecast sales were compared with expected sales of all pharmaceuticals in each country to quantify the relative budget impact. Results The model predicts that by 2020, 152 OMPs will have marketing authorization in Europe. The base case OMP budget impacts are forecast to grow from 2.7% in Sweden and 3.2% in France of total drug expenditure in 2013 to 4.1% in Sweden and 4.9% in France by 2020. The principal driver of expenditure growth is the number of new OMPs obtaining OMP designation. This is tempered by the slowing success rate for new approvals and the loss of intellectual property protection on existing orphan medicines. Given the forward-looking nature of the analysis, uncertainty exists around model parameters and sensitivity analysis found peak year budget impact varying between 2% and 11%. Conclusion The budget impact of OMPs in Sweden and France is likely to remain sustainable over time and a relatively small proportion of total pharmaceutical expenditure. This forecast could be affected by changes in the success rate for OMP approvals, average cost of OMPs, and the type of companies developing OMPs. PMID:24524281

  8. Anatomy of the Orphan Stream using RR Lyrae Stars

    Science.gov (United States)

    Hendel, David; Johnston, Kathryn; Scowcroft, Victoria; SMHASH

    2018-01-01

    Stellar tidal streams provide an opportunity to study the motion and structure of the disrupting galaxy as well as the gravitational potential of its host. Streams around the Milky Way are especially promising as new datasets make additional phase space dimensions available as constraints. We present observations of 32 stars thought to be RR Lyrae in the Orphan tidal stream as part of the {\\it Spitzer} Merger History and Shape of the Galactic Halo (SMHASH) program. The extremely tight correlation between the periods, luminosities, and metallicities of RR Lyrae variable stars in the {\\it Spitzer} IRAC $3.6\\mu$m band allows the determination of precise distances to individual stars; the median statistical distance uncertainty in this sample is $2.5\\%$. By fitting orbits in an example potential we obtain an upper limit on the mass of the Milky Way interior to 60 kpc of $\\mathrm{3.9_{-0.8}^{+1.2}\\times 10^{11} M_\\odot}$, bringing estimates based on the Orphan stream in line with those using other tracers. The SMHASH data also resolves the stream in line-of-sight depth, allowing unprecedented access its internal structure. Comparing this structure with n-body models we find that Orphan had an initial dark halo mass $\\sim \\mathrm{3 \\times 10^{9} M_\\odot}$, placing the progenitor amongst the classical dwarf spheriodals.

  9. Regulatory considerations for developing drugs for rare diseases: orphan designations and early phase clinical trials.

    Science.gov (United States)

    Pariser, Anne R; Xu, Kui; Milto, John; Coté, Timothy R

    2011-04-01

    The development of drug and biological products intended to treat rare diseases (Orphan diseases) is one of the fastest growing areas of clinical research, and also one of the most challenging. This article provides an introduction to two important regulatory considerations for Orphan drugs: Orphan status designations and general considerations for the administration of investigational agents in early phase clinical trials. Incentives available to orphan drug developers under the Orphan Drug Act (ODA) and requirements for obtaining an orphan status designation are discussed. An introductory overview of ethical and statutory considerations for investigational drugs, requirements for initiating investigational new drug applications (INDs), and sources of information and advice from the US Food and Drug Administration (FDA) are also described.

  10. Understanding the strategies employed to cope with increased numbers of AIDS-orphaned children in families in rural settings: a case of Mbeya Rural District, Tanzania.

    Science.gov (United States)

    Fauk, Nelsensius Klau; Mwakinyali, Silivano Edson; Putra, Sukma; Mwanri, Lillian

    2017-02-07

    The purpose of this study was to understand the strategies employed by families that adopt Acquired Immune Deficiency Syndrome (AIDS)-orphaned children (Adoptive families) for coping with and mitigating the impact of AIDS in Mbeya Rural District, Tanzania. High numbers of AIDS-orphaned children aged below 18 years in Mbeya Region have led to increasing the burden of families caring for them. Understanding the coping strategies and impact mitigation activities employed by adoptive families is important in order to develop programmes to help them. This study employed a qualitative method for data collection (one-on-one in-depth interviews). The respondents included 12 male and 8 female heads of families that provide essential care for AIDS-orphaned children in Mbeya Rural District in Tanzania. The framework approach was used to analyse the data that were collected from 15 July to 15 August 2010. The study findings revealed that adoptive families faced several challenges including financial constraints due to increased needs for basic essentials such as health care expenses, school fees and food. Further impacts on adoptive families included shortage of work opportunities and limited time to address these challenges. To mitigate these challenges, adoptive families employed a range of coping strategies including selling family assets and renting out parts of cultivable land for extra cash. Task reallocation which involved the AIDS-orphaned children entering the labour force was also employed as a strategy to mitigate challenges and involved de-enrolling of children from schools so they could take part in income-generating activities in order to earn supplementary family income. The creation of additional income-generating activities such as poultry farming were other coping mechanisms employed, and these received support from both non-governmental organisations (NGOs) and governmental organisations, including the Isangati Agricultural Development Organization (local

  11. An integrative review of how families are prepared for, and supported during withdrawal of life-sustaining treatment in intensive care.

    Science.gov (United States)

    Coombs, Maureen A; Parker, Roses; Ranse, Kristen; Endacott, Ruth; Bloomer, Melissa J

    2017-01-01

    The aim of this study was to conduct an integrative review on how nurses prepare families for and support families during withdrawal of life-sustaining treatments in intensive care. End-of-life care is widely acknowledged as integral to the practice of intensive care. However, little is known about what happens after the decision to withdraw life-sustaining treatments has been made and how families are prepared for death and the dying process. Integrative literature review. MEDLINE, CINAHL Plus, PsychINFO, PUBMED, Scopus, EMBASE and Web of Knowledge were searched for papers published between 2000-May 2015. A five stage review process, informed by Whittemore and Knafl's methodology was conducted. All papers were reviewed and quality assessment performed. Data were extracted, organized and analysed. Convergent qualitative thematic synthesis was used. From an identified 479 papers, 24 papers were included in this review with a range of research approaches: qualitative (n = 15); quantitative (n = 4); mixed methods (n = 2); case study (n = 2) and discourse analysis (n = 1). Thematic analysis revealed the nurses: equipped families for end of life through information provision and communication; managed the withdrawal of life-sustaining treatments to meet family need; and continued care to build memories. Greater understanding is needed of the language that can be used with families to describe death and dying in intensive care. Clearer conceptualization of the relationship between the medically focussed withdrawal of life-sustaining treatments and patient/family-centred end-of-life care is required making the nursing contribution at this time more visible. © 2016 John Wiley & Sons Ltd.

  12. Adverse childhood experiences, psychosocial well-being and cognitive development among orphans and abandoned children in five low income countries.

    Science.gov (United States)

    Escueta, Maya; Whetten, Kathryn; Ostermann, Jan; O'Donnell, Karen

    2014-03-10

    Development policymakers and child-care service providers are committed to improving the educational opportunities of the 153 million orphans worldwide. Nevertheless, the relationship between orphanhood and education outcomes is not well understood. Varying factors associated with differential educational attainment leave policymakers uncertain where to intervene. This study examines the relationship between psychosocial well-being and cognitive development in a cohort of orphans and abandoned children (OAC) relative to non-OAC in five low and middle income countries (LMICs) to understand better what factors are associated with success in learning for these children. Positive Outcomes for Orphans (POFO) is a longitudinal study, following a cohort of single and double OAC in institutional and community-based settings in five LMICs in Southeast Asia and sub-Saharan Africa: Cambodia, Ethiopia, India, Kenya, and Tanzania. Employing two-stage random sampling survey methodology to identify representative samples of OAC in six sites, the POFO study aimed to better understand factors associated with child well-being. Using cross-sectional and child-level fixed effects regression analyses on 1,480 community based OAC and a comparison sample of non-OAC, this manuscript examines associations between emotional difficulties, cognitive development, and a variety of possible co-factors, including potentially traumatic events. The most salient finding is that increases in emotional difficulties are associated with lags in cognitive development for two separate measures of learning within and across multiple study sites. Exposure to potentially traumatic events, male gender, and lower socio-economic status are associated with more reported emotional difficulties in some sites. Being female and having an illiterate caregiver is associated with lower performance on cognitive development tests in some sites, while greater wealth is associated with higher performance. There is no

  13. Patient-related factors and circumstances surrounding decisions to forego life-sustaining treatment, including intensive care unit admission refusal.

    Science.gov (United States)

    Reignier, Jean; Dumont, Romain; Katsahian, Sandrine; Martin-Lefevre, Laurent; Renard, Benoit; Fiancette, Maud; Lebert, Christine; Clementi, Eva; Bontemps, Frederic

    2008-07-01

    To assess decisions to forego life-sustaining treatment (LST) in patients too sick for intensive care unit (ICU) admission, comparatively to patients admitted to the ICU. Prospective observational cohort study. A medical-surgical ICU. Consecutive patients referred to the ICU during a one-yr period. None. Of 898 triaged patients, 147 were deemed too well to benefit from ICU admission. Decisions to forego LST were made in 148 of 666 (22.2%) admitted patients and in all 85 patients deemed too sick for ICU admission. Independent predictors of decisions to forego LST at ICU refusal rather than after ICU admission were: age; underlying disease; living in an institution; preexisting cognitive impairment; admission for medical reasons; and acute cardiac failure, acute central neurologic illness, or sepsis. Hospital mortality after decisions to forego LST was not significantly different in refused and admitted patients (77.5% vs. 86.5%; p = .1). Decisions to forego LST were made via telephone in 58.8% of refused patients and none of the admitted patients. Nurses caring for the patient had no direct contact with the ICU physicians for 62.3% of the decisions in refused patients, whereas meetings between nurses and physicians occurred in 70.3% of decisions to forego LST in the ICU. Patients or relatives were involved in 28.2% of decisions to forego LST at ICU refusal compared with 78.4% of decisions to forego LST in ICU patients (p refused patients (vs. none of admitted patients) and were associated with less involvement of nurses and relatives compared with decisions in admitted patients. Further work is needed to improve decisions to forego LST made under the distinctive circumstances of triage.

  14. A multi-professional educational intervention to improve and sustain respondents' confidence to deliver palliative care: A mixed-methods study.

    Science.gov (United States)

    Reed, Elizabeth; Todd, Jennifer; Lawton, Sally; Grant, Robert; Sadler, Clair; Berg, Jane; Lucas, Caroline; Watson, Max

    2017-06-01

    Education has been highlighted as fundamental in equipping healthcare professionals with essential knowledge and skills to provide good end-of-life care. Multiprofessional educational programmes have a positive influence on knowledge, attitude and confidence but few have sought to understand the longer term impact on care delivery. The European Certificate in Essential Palliative Care is an 8-week home-study-based programme for healthcare professionals and is currently run in nine centres. Successful candidates have undertaken the course from their own countries around the world. This article describes the evaluation of the European Certificate in Essential Palliative Care which has been evolving over 15 years. To evaluate the impact an educational intervention has on participants' confidence in palliative care, to determine whether this is sustained over time and explore participants' perception of the influence of the course on confidence. A mixed-method longitudinal approach. A survey using a self-efficacy scale was emailed to 342 candidates who received an educational intervention and semi-structured interviews to a sub-sample of 15 candidates at baseline, 3 and 6 months. At 3 months, candidates had almost 20 times higher odds of being above any given level of confidence than at baseline which was sustained at 6 months. Qualitative analysis identified examples of increased competence and confidence improving palliative care delivery. Findings suggest that the European Certificate in Essential Palliative Care improves confidence in palliative care and that this is sustained over time with evidence of confidence in symptom control, communication and a holistic approach in clinical practice.

  15. Characteristics of clinical trials to support approval of orphan vs nonorphan drugs for cancer.

    Science.gov (United States)

    Kesselheim, Aaron S; Myers, Jessica A; Avorn, Jerry

    2011-06-08

    The Orphan Drug Act incentivizes medication development for rare diseases, offering substantial financial benefits to the manufacturer. Orphan products constitute most new drug approvals in oncology, but safety and efficacy questions have emerged about some of these agents. To define characteristics of orphan cancer drugs and their pivotal clinical trials and to compare these with nonorphan drugs. We identified all new orphan and nonorphan drugs approved between 2004 and 2010 to treat cancer. We then collected data on key development variables from publicly available information on the US Food and Drug Administration's Web site and in the Code of Federal Regulations. We assessed clinical testing dates, approved indications, and regulatory characteristics (regular vs accelerated review, advisory committee review, postmarketing commitments). We then compared design features (randomization, blinding, primary end point) of pivotal trials supporting approval of orphan and nonorphan drugs and rates of adverse safety outcomes (deaths not attributed to disease progression, serious adverse events, dropouts) in pivotal trials. Fifteen orphan and 12 nonorphan drugs were approved between January 1, 2004, and December 31, 2010. Pivotal trials of orphan drugs had smaller participant numbers (median, 96 [interquartile range {IQR}, 66-152] vs 290 [IQR, 185-394] patients exposed to the drug; P Orphan and nonorphan pivotal trials varied in their blinding (P = .04), with orphan trials less likely to be double-blind (4% vs 33%). Primary study outcomes also varied (P = .04), with orphan trials more likely to assess disease response (68% vs 27%) rather than overall survival (8% vs 27%). More treated patients had serious adverse events in trials of orphan drugs vs trials of nonorphan drugs (48% vs 36%; odds ratio, 1.72; 95% confidence interval, 1.02-2.92; P = .04). Compared with pivotal trials used to approve nonorphan cancer drugs, pivotal trials for recently approved orphan drugs for

  16. Using a Lean Six Sigma Approach to Yield Sustained Pressure Ulcer Prevention for Complex Critical Care Patients.

    Science.gov (United States)

    Donovan, Elizabeth A; Manta, Christine J; Goldsack, Jennifer C; Collins, Michelle L

    2016-01-01

    Under value-based purchasing, Medicare withholds reimbursements for hospital-acquired pressure ulcer occurrence and rewards hospitals that meet performance standards. With little evidence of a validated prevention process, nurse managers are challenged to find evidence-based interventions. The aim of this study was to reduce the unit-acquired pressure ulcer (UAPU) rate on targeted intensive care and step-down units by 15% using Lean Six Sigma (LSS) methodology. An interdisciplinary team designed a pilot program using LSS methodology to test 4 interventions: standardized documentation, equipment monitoring, patient out-of-bed-to-chair monitoring, and a rounding checklist. During the pilot, the UAPU rate decreased from 4.4% to 2.8%, exceeding the goal of a 15% reduction. The rate remained below the goal through the program control phase at 2.9%, demonstrating a statistically significant reduction after intervention implementation. The program significantly reduced UAPU rates in high-risk populations. LSS methodologies are a sustainable approach to reducing hospital-acquired conditions that should be broadly tested and implemented.

  17. Significant Comparative Characteristics between Orphan and Nonorphan Genes in the Rice (Oryza sativa L. Genome

    Directory of Open Access Journals (Sweden)

    Wen-Jiu Guo

    2007-01-01

    Full Text Available Microsatellites are short tandem repeats of one to six bases in genomic DNA. As microsatellites are highly polymorphic and play a vital role in gene function and recombination, they are an attractive subject for research in evolution and in the genetics and breeding of animals and plants. Orphan genes have no known homologs in existing databases. Using bioinformatic computation and statistical analysis, we identified 19,26 orphan genes in the rice (Oryza sativa ssp. Japanica cv. Nipponbare proteome. We found that a larger proportion of orphan genes are expressed after sexual maturation and under environmental pressure than nonorphan genes. Orphan genes generally have shorter protein lengths and intron size, and are faster evolving. Additionally, orphan genes have fewer PROSITE patterns with larger pattern sizes than those in nonorphan genes. The average microsatellite content and the percentage of trinucleotide repeats in orphan genes are also significantly higher than in nonorphan genes. Microsatellites are found less often in PROSITE patterns in orphan genes. Taken together, these orphan gene characteristics suggest that microsatellites play an important role in orphan gene evolution and expression.

  18. Current Problems in Provision of Orphan Drugs and Ways to Solve Them

    Directory of Open Access Journals (Sweden)

    Alexei S. Kolbin

    2016-01-01

    Full Text Available Despite the fact that orphan (rare diseases are characterized by a very low prevalence rate, a considerable number of people worldwide suffer from these diseases. The United States and the European Union developed a variety of economic and administrative incentives for pharmaceutical companies to produce orphan drugs, but their effectiveness is difficult to assess because of the small sample volume and complex organization of clinical trials. The average cost of orphan drugs is 5 times greater than that of the drugs used in the treatment of other diseases. Pricing mechanisms on orphan drugs are still poorly understood.

  19. Orphan drug pricing and payer management in the United States: are we approaching the tipping point?

    Science.gov (United States)

    Hyde, Rebecca; Dobrovolny, Diana

    2010-01-01

    The Orphan Drug Act of 1983 paved the way for the development of drugs that treat rare diseases, defined in the United States as those affecting fewer than 200,000 patients. Orphan drugs can cost hundreds of thousands of dollars annually, but insurers have traditionally covered these therapies because the small populations involved did not typically lead to significant cost exposure. Payer sensitivity to the cost of orphan drugs is rising, however, with the accelerated rate of new launches of these agents amid intensified economic pressure. Payers are showing increasing levels of concern and scrutiny about coverage of orphan drugs. A new payer survey conducted between February 2008 and March 2009 provides insights on how payers are managing orphan drugs and the way it is likely to evolve in the future. Survey findings show that the patient share of orphan drug costs is rising and is expected to continue to rise, barring sweeping changes in public health policy. This shift in benefit design could affect patient access to orphan agents and, therefore, drug utilization. Manufacturers will have to invest in research to understand payer impact on the uptake of their orphan drugs in development. They will also benefit from being prepared to develop strategies to ensure patient access to and affordability of their orphan agents.

  20. Sustainable effects of a low-threshold physical activity intervention on health-related quality of life in residential aged care

    Directory of Open Access Journals (Sweden)

    Quehenberger V

    2014-11-01

    Full Text Available Viktoria Quehenberger, Martin Cichocki, Karl Krajic Health promoting Long term Care, Ludwig Boltzmann Institut Health Promotion Research, Vienna, Austria Background: Mobility is a main issue for health-related quality of life in old age. There is evidence for effects of physical activity (PA interventions on several dimensions of health for the aged and also, some specific evidence for vulnerable populations, like residents of residential aged care. Research on low-threshold PA interventions for users of residential aged care and documentation of their sustainability are scarce. “Low threshold” implies moderate demands on the qualification of trainers and low frequency of conduct, implying low demands on the health status and discipline of users. Yet the investigation of low-threshold interventions in residential aged care seems important as they might foster participation of users and implementation in everyday routines of provider organizations. An initial study (October 2011 to June 2012 had found intervention effects on health-related quality of life. The objective of this study was to examine sustainability of the effects of a low-threshold PA intervention on health-related quality of life in residential aged care. Methods: Data collection took place in three residential aged care homes in Vienna, Austria. At 1-year follow-up (June 2013, participants from the intervention group were interviewed using a standardized questionnaire. Using general mixed linear models and Friedman tests followed by paired t- and Wilcoxon signed-rank tests, we compared outcome measures at follow-up with measures obtained at baseline and at the end of the intervention.Results: At the 1-year follow-up assessment, participants’ (mean age 84.7 years; 89.7% female subjective health status was still significantly increased, equaling a small sustainable intervention effect (Cohen’s d=0.38, P=0.02. In comparison with baseline, a significant decline of reported

  1. Provider Perspectives on Advance Care Planning Documentation in the Electronic Health Record: The Experience of Primary Care Providers and Specialists Using Advance Health-Care Directives and Physician Orders for Life-Sustaining Treatment.

    Science.gov (United States)

    Dillon, Ellis; Chuang, Judith; Gupta, Atul; Tapper, Sharon; Lai, Steve; Yu, Peter; Ritchie, Christine; Tai-Seale, Ming

    2017-12-01

    Advance care planning (ACP) is valued by patients and clinicians, yet documenting ACP in an accessible manner is problematic. In order to understand how providers incorporate electronic health record (EHR) ACP documentation into clinical practice, we interviewed providers in primary care and specialty departments about ACP practices (n = 13) and analyzed EHR data on 358 primary care providers (PCPs) and 79 specialists at a large multispecialty group practice. Structured interviews were conducted with 13 providers with high and low rates of ACP documentation in primary care, oncology, pulmonology, and cardiology departments. The EHR problem list data on Advance Health Care Directives (AHCDs) and Physician Orders for Life-Sustaining Treatment (POLST) were used to calculate ACP documentation rates. Examining seriously ill patients ≥65 years with no preexisting ACP documentation seen by providers during 2013 to 2014, 88.6% (AHCD) and 91.1% (POLST) of 79 specialists had zero ACP documentations. Of 358 PCPs, 29.1% (AHCD) and 62.3% (POLST) had zero ACP documentations. Interviewed PCPs often believed ACP documentation was beneficial and accessible, while specialists more often did not. Specialists expressed more confusion about documenting ACP, whereas PCPs reported standard clinic workflows. Problems with interoperability between outpatient and inpatient EHR systems and lack of consensus about who should document ACP were sources of variations in practices. Results suggest that providers desire standardized workflows for ACP discussion and documentation. New Medicare reimbursement for ACP and an increasing number of quality metrics for ACP are incentives for health-care systems to address barriers to ACP documentation.

  2. Estimating the budget impact of orphan medicines in Europe: 2010 - 2020

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    Milanova Tsveta

    2011-09-01

    Full Text Available Abstract Background Orphan drugs are a growing issue of importance to European healthcare policy makers. The success of orphan drug legislation in Europe has resulted in an increasing number of licensed medicines for rare diseases, and many more yet unlicensed products have received orphan drug designation. Increasingly the concerns amongst policy makers relate to issues of patient access and affordability, yet few studies have sought to estimate the future budget impact of orphan drugs. The aim of this study was to predict the total cost of orphan medicines in Europe between 2010 and 2020 as a percentage of total European pharmaceutical expenditure. Methods A disease-based epidemiological model was created based upon trends in the designation and approval of new orphan medicines, prevalence estimates for orphan diseases, and historical price and sales data for orphan drugs in Europe (defined as Eurozone + UK. The analysis incorporated two stages: 1 Predicting the number of diseases for which new orphan drugs will be approved over the next decade, based on an analysis of trends from the EU registry of orphan medicines; 2 Estimating the average ex-factory drug cost across an orphan disease life cycle, from the year in which the first orphan medicine is launched to the point where the first medicine loses marketing exclusivity. The two sets of information were combined to quantify the annual cost of orphan drugs from 2010 through 2020. Results The results from the model predicted a steady increase in the cumulative number of diseases for which an orphan drug is approved, averaging just over 5 new diseases per year over the next 10 years. The annual per patient cost of existing orphan drugs was seen to vary between €1,251 and €407,631, with the median cost being €32,242 per year. The share of the total pharmaceutical market represented by orphan drugs is predicted to increase from 3.3% in 2010 to a peak of 4.6% in 2016 after which it is

  3. Estimating the budget impact of orphan medicines in Europe: 2010 - 2020.

    Science.gov (United States)

    Schey, Carina; Milanova, Tsveta; Hutchings, Adam

    2011-09-27

    Orphan drugs are a growing issue of importance to European healthcare policy makers. The success of orphan drug legislation in Europe has resulted in an increasing number of licensed medicines for rare diseases, and many more yet unlicensed products have received orphan drug designation. Increasingly the concerns amongst policy makers relate to issues of patient access and affordability, yet few studies have sought to estimate the future budget impact of orphan drugs. The aim of this study was to predict the total cost of orphan medicines in Europe between 2010 and 2020 as a percentage of total European pharmaceutical expenditure. A disease-based epidemiological model was created based upon trends in the designation and approval of new orphan medicines, prevalence estimates for orphan diseases, and historical price and sales data for orphan drugs in Europe (defined as Eurozone + UK). The analysis incorporated two stages: 1) Predicting the number of diseases for which new orphan drugs will be approved over the next decade, based on an analysis of trends from the EU registry of orphan medicines; 2) Estimating the average ex-factory drug cost across an orphan disease life cycle, from the year in which the first orphan medicine is launched to the point where the first medicine loses marketing exclusivity. The two sets of information were combined to quantify the annual cost of orphan drugs from 2010 through 2020. The results from the model predicted a steady increase in the cumulative number of diseases for which an orphan drug is approved, averaging just over 5 new diseases per year over the next 10 years. The annual per patient cost of existing orphan drugs was seen to vary between €1,251 and €407,631, with the median cost being €32,242 per year. The share of the total pharmaceutical market represented by orphan drugs is predicted to increase from 3.3% in 2010 to a peak of 4.6% in 2016 after which it is expected to level off through 2020, as growth falls into

  4. The effect of statutory limitations on the authority of substitute decision makers on the care of patients in the intensive care unit: case examples and review of state laws affecting withdrawing or withholding life-sustaining treatment.

    Science.gov (United States)

    Venkat, Arvind; Becker, Julianna

    2014-01-01

    While the ethics and critical care literature is replete with discussion of medical futility and the ethics of end-of-life care decisions in the intensive care unit, little attention is paid to the effect of statutory limitations on the authority of substitute decision makers during the course of treatment of patients in the critical care setting. In many jurisdictions, a clear distinction is made between the authority of a health care power of attorney, who is legally designated by a competent adult to make decisions regarding withholding or withdrawing life-sustaining treatment, and of next-of-kin, who are limited in this regard. However, next-of-kin are often relied upon to consent to necessary procedures to advance a patient's medical care. When conflicts arise between critical care physicians and family members regarding projected patient outcome and functional status, these statutory limitations on decision-making authority by next of kin can cause paralysis in the medical care of severely ill patients, leading to practical and ethical impasses. In this article, we will provide case examples of how statutory limitations on substitute decision making authority for next of kin can impede the care of patients. We will also review the varying jurisdictional limitations on the authority of substitute decision makers and explore their implications for patient care in the critical care setting. Finally, we will review possible ethical and legal solutions to resolve these impasses.

  5. Nurses' Experiences of End-of-life Care in Long-term Care Hospitals in Japan: Balancing Improving the Quality of Life and Sustaining the Lives of Patients Dying at Hospitals.

    Science.gov (United States)

    Odachi, Ryo; Tamaki, Tomoko; Ito, Mikiko; Okita, Taketoshi; Kitamura, Yuri; Sobue, Tomotaka

    2017-09-01

    In Japan, about 80% of deaths occur in hospitals, especially long-term care beds. The purpose of this study was to clarify the nursing practices used for such older patients at the end-of-life stage in long-termcare wards via the modified grounded theory approach (M-GTA). Data were obtained through semi-structured interviews of nineteen nurses working in cooperating long-term care wards, acute care wards, or hospice services (to allow for constant comparison between these types of wards) in western Japan in 2014. We analyzed the transcribed data using M-GTA. The core category that emerged from the analysis was "Balancing enhancement of patients' daily life quality and life-sustaining care in the face of uncertainty about the patients' character." Eleven categories emerged, such as Seeking older patients' character with their family, Supporting families' decision making, Rebuilding patients' daily life in the ward, and Sustaining patients' life span through medical care. Nurses experienced uncertainty about the care needs of older patients, the ethical problems of Enhancing the patients' QOL by using risky care, and the evaluation criteria used to judge their own nursing care after the patients' death. All nurses had the goal of ensuring a natural death for all patients. Nurses' acceptance and evaluation of their own care was critically influenced by the patient's family's responses to their care after patients' death. Further research is necessary to develop evaluation criteria and educational programs for end-of-life nursing care of older adults. Copyright © 2017. Published by Elsevier B.V.

  6. Determinants of (sustained overweight and complaints in children and adolescents in primary care: the DOERAK cohort study design

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    Paulis Winifred D

    2012-07-01

    Full Text Available Abstract Background Almost half of the adult Dutch population is currently overweight and the prevalence of overweight children is rising at alarming rates as well. Obese children consult their general practitioner (GP more often than normal weight children. The Dutch government has assigned a key role to the GP in the prevention of overweight. The DOERAK cohort study aims to clarify differences between overweight and non-overweight children that consult the GP; are there differences in number of consultations and type and course of complaints? Is overweight associated with lower quality of life or might this be influenced by the type of complaint? What is the activity level of overweight children compared to non-overweight children? And is (sustained overweight of children associated with parameters related to the energy balance equation? Methods/Design A total of 2000 overweight (n = 500 and non-overweight children (n = 1500 aged 2 to 18 years who consult their GP, for any type of complaint in the South-West of the Netherlands are included. At baseline, height, weight and waist circumference are measured during consultation. The number of GP consultations over the last twelve months and accompanying diagnoses are acquired from the medical file. Complaints, quality of life and parameters related to the energy balance equation are assessed with an online questionnaire children or parents fill out at home. Additionally, children or parents keep a physical activity diary during the baseline week, which is validated in a subsample (n = 100 with an activity monitor. Parents fill out a questionnaire about demographics, their own activity behaviour and perceptions on dietary habits and activity behaviour, health and weight status of their child. The physical and lifestyle behaviour questions are repeated at 6, 12 and 24 months follow-up. The present study is a prospective observational cohort in a primary care setting. Discussion The

  7. Sustainability in Health care by Allocating Resources Effectively (SHARE) 9: conceptualising disinvestment in the local healthcare setting.

    Science.gov (United States)

    Harris, Claire; Green, Sally; Ramsey, Wayne; Allen, Kelly; King, Richard

    2017-09-08

    This is the ninth in a series of papers reporting a program of Sustainability in Health care by Allocating Resources Effectively (SHARE) in a local healthcare setting. The disinvestment literature has broadened considerably over the past decade; however there is a significant gap regarding systematic, integrated, organisation-wide approaches. This debate paper presents a discussion of the conceptual aspects of disinvestment from the local perspective. Four themes are discussed: Terminology and concepts, Motivation and purpose, Relationships with other healthcare improvement paradigms, and Challenges to disinvestment. There are multiple definitions for disinvestment, multiple concepts underpin the definitions and multiple alternative terms convey these concepts; some definitions overlap and some are mutually exclusive; and there are systematic discrepancies in use between the research and practice settings. Many authors suggest that the term 'disinvestment' should be avoided due to perceived negative connotations and propose that the concept be considered alongside investment in the context of all resource allocation decisions and approached from the perspective of optimising health care. This may provide motivation for change, reduce disincentives and avoid some of the ethical dilemmas inherent in other disinvestment approaches. The impetus and rationale for disinvestment activities are likely to affect all aspects of the process from identification and prioritisation through to implementation and evaluation but have not been widely discussed. A need for mechanisms, frameworks, methods and tools for disinvestment is reported. However there are several health improvement paradigms with mature frameworks and validated methods and tools that are widely-used and well-accepted in local health services that already undertake disinvestment-type activities and could be expanded and built upon. The nature of disinvestment brings some particular challenges for policy

  8. A psychologist-led educational intervention results in a sustained reduction in neonatal intensive care unit infections.

    Science.gov (United States)

    Van Rostenberghe, Hans; Short, Jacki; Ramli, Noraida; Geok, Tan Beng; Subramaniam, Sivasangari; Che Yaakob, Che Anuar; Othman, Azizah; Ibrahim, Nor Rosidah; Ho, Jacqueline; Mohamed, Zeehaida; Hasan, Habsah

    2014-01-01

    Even though in the corporate world psychological science has been widely used, the formal use of evidence-based psychology in important areas of clinical medicine has been scanty at best. It was the aim of this study to determine the efficacy of a psychologist-led 2-week nurse educator training on the infection rate in the neonatal intensive care unit (NICU). In 2007, six senior neonatal nurses underwent a training course focusing on the retrieval of evidence and knowledge of psychological principles that would allow them to share the evidence in such a way that evidence is effectively brought into practice. The course was led by a psychologist. The nurses created and delivered their own teaching modules, all focused on infection control. The rates of bacteremia, 2 years prior to intervention were analyzed and compared with the rate following the intervention for 3 years. The immediate output of the course included three teaching modules: hand washing, sterile procedures, and general measures to control infection. These modules were subsequently administered to the NICU nurses in regular structured continuous nursing education sessions. The psychological techniques taught in the course were applied. Bacteremia in the NICU significantly decreased in the year of the course and the subsequent years when compared to previous years (from more than 17 in 2005 and 2006 to less than 10 per 100 admissions to the NICU in 2008 and 2009). This study suggests that a psychologist-led course, followed by a structured CNE can lead to a sustainable reduction in infection rates in a NICU.

  9. A Psychologist-Led Educational Intervention Results in a Sustained Reduction in Neonatal Intensive Care Unit Infections

    Science.gov (United States)

    Van Rostenberghe, Hans; Short, Jacki; Ramli, Noraida; Geok, Tan Beng; Subramaniam, Sivasangari; Che Yaakob, Che Anuar; Othman, Azizah; Ibrahim, Nor Rosidah; Ho, Jacqueline; Mohamed, Zeehaida; Hasan, Habsah

    2014-01-01

    Even though in the corporate world psychological science has been widely used, the formal use of evidence-based psychology in important areas of clinical medicine has been scanty at best. It was the aim of this study to determine the efficacy of a psychologist-led 2-week nurse educator training on the infection rate in the neonatal intensive care unit (NICU). Materials and methods: In 2007, six senior neonatal nurses underwent a training course focusing on the retrieval of evidence and knowledge of psychological principles that would allow them to share the evidence in such a way that evidence is effectively brought into practice. The course was led by a psychologist. The nurses created and delivered their own teaching modules, all focused on infection control. The rates of bacteremia, 2 years prior to intervention were analyzed and compared with the rate following the intervention for 3 years. Results: The immediate output of the course included three teaching modules: hand washing, sterile procedures, and general measures to control infection. These modules were subsequently administered to the NICU nurses in regular structured continuous nursing education sessions. The psychological techniques taught in the course were applied. Bacteremia in the NICU significantly decreased in the year of the course and the subsequent years when compared to previous years (from more than 17 in 2005 and 2006 to less than 10 per 100 admissions to the NICU in 2008 and 2009). Conclusion: This study suggests that a psychologist-led course, followed by a structured CNE can lead to a sustainable reduction in infection rates in a NICU. PMID:25478550

  10. Home point-of-care international normalised ratio monitoring sustained by a non-selective educational program in children.

    Science.gov (United States)

    Bajolle, Fanny; Lasne, Dominique; Elie, Caroline; Cheurfi, Radhia; Grazioli, Aurélie; Traore, Maladon; Souillard, Patrick; Boudjemline, Younes; Jourdain, Patrick; Bonnet, Damien

    2012-10-01

    Adverse events related to vitamin K antagonist (VKA) therapy might be reduced by point-of-care international normalised ratio (POC INR) monitoring supported by an education program (EP). Our aim was to evaluate the efficacy of a non-selective VKA paediatric EP (regardless of the social, economic, educational or linguistic levels) by analysing the time spent in the therapeutic range (TTR), VKA adverse events and compliance to treatment, and INR control prescriptions. The EP was modified from the pediatric EP previously described but improved by a specifically devised child-focused game. One hundred four consecutive children (median age 8 years) receiving VKA were included in a standardised EP. Patients were in self-testing, and dose adjustments were made by a single physician for three tolerance ranges according to the underlying disease: [2.5-4], [1.8-3.2], and [1.5-2.5]. The median follow-up was 481 days [70-1,001]. The overall TTR was 81.4% [36-100]. The TTR were 74%, 85.6% and 89% for the ranges [2.5-4], [1.8-3.2], and [1.5-2.5], respectively. These results were sustainable during the study period. Only one serious VKA adverse event was recorded. The median number of POC INR tests was 2.5 [1.6-5.7] INR per patient and month. Patients/families performed POC INR when requested in 86.9% of the cases. More than 90% of the families found the EP supportive and wished to follow a long-term reinforcement program. In conclusion, this non-selective child-focused EP for VKA therapy, strongly supported by our dedicated game, is useful in maintaining efficacy, safety and compliance to anticoagulation and its monitoring.

  11. Horizontal alveolar bone loss: A periodontal orphan

    Science.gov (United States)

    Jayakumar, A.; Rohini, S.; Naveen, A.; Haritha, A.; Reddy, Krishnanjeneya

    2010-01-01

    Background: Attempts to successfully regenerate lost alveolar bone have always been a clinician’s dream. Angular defects, at least, have a fairer chance, but the same cannot be said about horizontal bone loss. The purpose of the present study was to evaluate the prevalence of horizontal alveolar bone loss and vertical bone defects in periodontal patients; and later, to correlate it with the treatment modalities available in the literature for horizontal and vertical bone defects. Materials and Methods: The study was conducted in two parts. Part I was the radiographic evaluation of 150 orthopantomographs (OPGs) (of patients diagnosed with chronic periodontitis and seeking periodontal care), which were digitized and read using the AutoCAD 2006 software. All the periodontitis-affected teeth were categorized as teeth with vertical defects (if the defect angle was ≤45° and defect depth was ≥3 mm) or as having horizontal bone loss. Part II of the study comprised search of the literature on treatment modalities for horizontal and vertical bone loss in four selected periodontal journals. Results: Out of the 150 OPGs studied, 54 (36%) OPGs showed one or more vertical defects. Totally, 3,371 teeth were studied, out of which horizontal bone loss was found in 3,107 (92.2%) teeth, and vertical defects were found only in 264 (7.8%) of the teeth, which was statistically significant (P<.001). Search of the selected journals revealed 477 papers have addressed the treatment modalities for vertical and horizontal types of bone loss specifically. Out of the 477 papers, 461 (96.3%) have addressed vertical bone loss, and 18 (3.7%) have addressed treatment options for horizontal bone loss. Two papers have addressed both types of bone loss and are included in both categories. Conclusion: Horizontal bone loss is more prevalent than vertical bone loss but has been sidelined by researchers as very few papers have been published on the subject of regenerative treatment modalities for

  12. Orphan nuclear receptors as targets for drug development.

    Science.gov (United States)

    Mukherjee, Subhajit; Mani, Sridhar

    2010-08-01

    Orphan nuclear receptors regulate diverse biological processes. These important molecules are ligand-activated transcription factors that act as natural sensors for a wide range of steroid hormones and xenobiotic ligands. Because of their importance in regulating various novel signaling pathways, recent research has focused on identifying xenobiotics targeting these receptors for the treatment of multiple human diseases. In this review, we will highlight these receptors in several physiologic and pathophysiologic actions and demonstrate how their functions can be exploited for the successful development of newer drugs.

  13. Sustainability of recurrent expenditure on public social welfare programmes: expenditure analysis of the free maternal care programme of the Ghana National Health Insurance Scheme.

    Science.gov (United States)

    Ankrah Odame, Emmanuel; Akweongo, Patricia; Yankah, Ben; Asenso-Boadi, Francis; Agyepong, Irene

    2014-05-01

    Sustainability of public social welfare programmes has long been of concern in development circles. An important aspect of sustainability is the ability to sustain the recurrent financial costs of programmes. A free maternal care programme (FMCP) was launched under the Ghana National Health Insurance Scheme (NHIS) in 2008 with a start-up grant from the British Government. This article examines claims expenditure under the programme and the implications for the financial sustainability of the programme, and the lessons for donor and public financing of social welfare programmes. Records of reimbursement claims for services and medicines by women benefitting from the policy in participating facilities in one sub-metropolis in Ghana were analysed to gain an understanding of the expenditure on this programme at facility level. National level financial inflow and outflow (expenditure) data of the NHIS, related to implementation of this policy for 2008 and 2009, were reviewed to put the facility-based data in the national perspective. A total of US$936 450.94 was spent in 2009 by the scheme on FMCP in the sub-metropolis. The NHIS expenditure on the programme for the entire country in 2009 was US$49.25 million, exceeding the British grant of US$10.00 million given for that year. Subsequently, the programme has been entirely financed by the National Health Insurance Fund. The rapidly increasing, recurrent demands on this fund from the maternal delivery exemption programme-without a commensurate growth on the amounts generated annually-is an increasing threat to the sustainability of the fund. Provision of donor start-up funding for programmes with high recurrent expenditures, under the expectation that government will take over and sustain the programme, must be accompanied by clear long-term analysis and planning as to how government will sustain the programme.

  14. FMRFamide related peptide ligands activate the Caenorhabditis elegans orphan GPCR Y59H11AL.1

    Science.gov (United States)

    G-protein coupled receptors (GPCRs) are ancient molecules that sense environmental and physiological signals. Currently, the majority of the predicted Caenorhabditis elegans GPCRs are orphan. Here, we describe the characterization of such an orphan C. elegans GPCR, which is categorized in the tachyk...

  15. Migration, Household Configurations, and the Well-Being of Adolescent Orphans in Rwanda.

    Science.gov (United States)

    Thomas, Kevin J A

    2012-08-01

    This study uses data from the 2002 Rwandan census to situate the discourse on migration and orphan well-being within the context of the household. According to its findings, migrant orphans are less likely than non-migrant orphans to live in households with less favorable structural characteristics such as single-parent households. Significant differences are also found in the implied gains to living standards and schooling associated with migration among paternal, maternal, and double-orphans. However, the higher living standards and schooling attainment of orphan migrants relative to their non-migrant counterparts disappear within child-headed household contexts. More generally, the results indicate that the higher living standards of migrant orphans are in part driven by the fact that they mostly live in households with migrant household-heads or migrant spouses. Yet the analysis also suggests that orphans living within these contexts experience higher levels of intra-household discrimination in investments in their schooling, relative to their orphan counterparts who live in non-migrant households.

  16. Educational Inequalities and Ukrainian Orphans' Future Pathways: Social Reproduction or Transformation through the Hidden Curriculum?

    Science.gov (United States)

    Korzh, Alla

    2013-01-01

    This qualitative multi-site case study, situated in the context of Ukraine's post-Soviet political economy, examined how orphanage educators' expectations and beliefs about orphans' academic abilities and potential, curriculum, peer relationships, and education policy shaped orphans' post-secondary education decisions and trajectories. Examination…

  17. Review The mental health of children orphaned by AIDS: a review of ...

    African Journals Online (AJOL)

    Review The mental health of children orphaned by AIDS: a review of international and southern African research. Lucie Cluver, Frances Gardner. Abstract. This paper reviews research on the mental health and psychological outcomes of children who are orphaned by AIDS. Studies are limited, scattered and often ...

  18. 76 FR 29183 - Exclusion of Orphan Drugs for Certain Covered Entities Under 340B Program

    Science.gov (United States)

    2011-05-20

    ... selling orphan drugs through the 340B Program to the newly- eligible covered entities to avoid best price... manufacturers have stated that they will stop selling orphan drugs through the 340B Program to newly-eligible... Social Security Act); (2) A family planning project receiving a grant or contract under section 1001 of...

  19. Persisting Mental Health Problems among AIDS-Orphaned Children in South Africa

    Science.gov (United States)

    Cluver, Lucie D.; Orkin, Mark; Gardner, Frances; Boyes, Mark E.

    2012-01-01

    Background: By 2008, 12 million children in sub-Saharan Africa were orphaned by AIDS. Cross-sectional studies show psychological problems for AIDS-orphaned children, but until now no longitudinal study has explored enduring psychological effects of AIDS-orphanhood in the developing world. Methods: A 4-year longitudinal follow-up of AIDS-orphaned…

  20. The Orphan Drug Act and the development of stem cell-based products for rare diseases.

    Science.gov (United States)

    Freeman, Scott N; Burke, Kathryn A; Imoisili, Menfo A; Coté, Timothy R

    2010-09-03

    The Orphan Drug Act encourages the development of products for rare diseases and conditions. Many conditions that stand to benefit from stem cell-based products are rare diseases. We address the Orphan Drug Act in relation to the development of stem cell-based products. Copyright 2010 Elsevier Inc. All rights reserved.

  1. The Use of Drawings to Facilitate Interviews with Orphaned Children in Mpumalanga Province, South Africa

    Science.gov (United States)

    Ogina, Teresa A.

    2012-01-01

    HIV/AIDS and being orphaned impact greatly on children's lives. This article explores the life experiences of orphaned children in Mpumalanga province, South Africa. In this qualitative case study, draw-write techniques and face-to-face interviews were used to generate data related to the experiences of the children. Results suggest that although…

  2. Psychosocial Support for Children Orphaned by HIV/AIDS in Zimbabwe

    Science.gov (United States)

    Chitiyo, Jonathan; Chitiyo, Argnue; Chitiyo, Morgan

    2016-01-01

    Healthy psychosocial development during childhood is a key determinant to the future well-being of all individuals. In many areas of Africa, demand for psychosocial support continues to grow in response to the increasing number of children left orphaned as a result of the HIV/AIDS pandemic. These orphans face various challenges and yet, in most…

  3. Providing Psychosocial Support to Special Needs Children: A Case of Orphans and Vulnerable Children in Zimbabwe

    Science.gov (United States)

    Chitiyo, Morgan; Changara, Darlington M.; Chitiyo, George

    2008-01-01

    The AIDS pandemic has orphaned hundreds of thousands of children worldwide and most of these are in sub-Saharan Africa. Being orphaned by AIDS creates peculiar circumstances which may affect the children's ability to benefit from regular education. The impact of vulnerability on children's well-being has been documented by UNAIDS, UNICEF and by…

  4. Psychological Characteristics of Adolescents Orphans with Different Experience of Living in a Family

    Science.gov (United States)

    Shulga, Tatyana I.; Savchenko, Daria D.; Filinkova, Evgeniya B.

    2016-01-01

    The complexity of settling adolescents-orphans in foster families and significant number of break-downs in these families are the problems which determine the relevance of current research. Many adolescent orphans get in social institutions repeatedly, because their psychological features lead to difficulties that their foster parents are unable…

  5. Neglect and perceived stigmatization impact psychological distress of orphans in Tanzania

    Directory of Open Access Journals (Sweden)

    Katharin Hermenau

    2015-11-01

    Full Text Available Background: Research has shown that orphans in sub-Saharan Africa are at increased risk for mental health problems. Exposure to maltreatment and HIV/AIDS-related stigmatization are related to orphans’ psychological distress. Yet, researchers stress the need for more research in low-income countries to identify which factors of being an orphan may lead to psychological distress. Objectives: The present study aims to systematically investigate orphans’ experiences of maltreatment and stigmatization to identify factors that relate to their psychological distress. Methods: In total, 89 Tanzanian children who had lost at least one parent were compared to 89 matched non-orphans (mean age: 11 years; 51% boys. We measured exposure to maltreatment and perceived stigmatization as an orphan. Mental health was assessed using the Strengths and Difficulties Questionnaire, the Children's Depression Inventory, the UCLA PTSD Index for Children, and the Reactive–Proactive Questionnaire. Results: Orphans reported significantly more experiences of neglect, but not of abuse. A group comparison revealed more depressive symptoms, posttraumatic stress symptoms, and aggressive behavior among orphans. Neglect, abuse, and stigmatization correlated with orphans’ internalizing and externalizing problems, yet only neglect and stigmatization were related to orphans’ depression severity. Perceived stigmatization moderated the relationship between neglect and depression. Conclusions: Our findings suggest that orphans in Tanzania are at increased risk of experiencing neglect. Maltreatment and perceived stigmatization may play a role in orphans’ psychological distress. Culturally appropriate and evidence-based interventions may help to prevent maltreatment and stigmatization of orphans.

  6. Social sustainability in healthcare facilities: a rating tool for analysing and improving social aspects in environments of care.

    Science.gov (United States)

    Capolongo, Stefano; Gola, Marco; di Noia, Michela; Nickolova, Maria; Nachiero, Dario; Rebecchi, Andrea; Settimo, Gaetano; Vittori, Gail; Buffoli, Maddalena

    2016-01-01

    Nowadays several rating systems exist for the evaluation of the sustainability of buildings, but often their focus is limited to environmental and efficiency aspects. Hospitals are complex constructions in which many variables affect hospital processes. Therefore, a research group has developed a tool for the evaluation of sustainability in healthcare facilities. The paper analyses social sustainability issues through a tool which evaluates users' perception from a the quality and well-being perspective. It presents a hierarchical structure composed of a criteria and indicators system which is organised through a weighing system calculated by using the Analytic Network Process. The output is the definition of a tool which evaluates how Humanisation, Comfort and Distribution criteria can affect the social sustainability of a building. Starting from its application, it is evident that the instrument enables the improvement of healthcare facilities through several design and organisational suggestions for achieving healing and sustainable architectures.

  7. Education integrated into structured general practice care for Type 2 diabetic patients results in sustained improvement of disease knowledge and self-care

    NARCIS (Netherlands)

    van den Arend, IJM; Stolk, RP; Rutten, GEHM; Schrijvers, GJP

    Aims The objective of this study was to study the effectiveness of structured care with and without integrated education with regard to patients' knowledge, self-care behaviour and disease perception. Methods Four diabetes care programmes implemented in a daily primary care setting were compared,

  8. A study of descriptive data for orphans and non-orphans on key criteria of economic vulnerability in two municipalities in South Africa

    Directory of Open Access Journals (Sweden)

    Donald Skinner

    2013-05-01

    Full Text Available Background: It is generally assumed that orphan status increases the risk to children of a range of negative outcomes. In South Africa, death of parents due to HIV-related illness is contributing to a rapid increase in the prevalence of orphans. This paper presents descriptive data from two South African communities, namely Kopanong, in the Free State and Kanana in the North West province, characterising the differences between orphans (double, maternal and paternal and non-orphans on key criteria of social vulnerability.Objectives: The objective was to obtain a better understanding of how different types of orphans and non-orphans may differ in these key areas as a crucial starting point for addressing the devastating consequences the AIDS epidemic has on these children’s lives. While the study focuses on two specific areas these will provide insight into the general situation of orphans in South Africa.Methods: A cross-sectional census survey was conducted in the two communities of Kopanong, comprising n = 5254 households and Kanana, comprising n = 12 984 households.Results: In Kopanong, 8.2% of children had lost both parents, 19.1% had lost their father and 6.5% their mother only, whilst in Kanana the results were 6.5%, 28.1% and 3.7% respectively. Loss of both parents appeared to have a consistent impact on material need, including access to food, clothing and essential services, whilst loss of a single parent seems to have a more variable impact. At present, there are very few child headed households, but this constitutes a risk in the longer term. Conclusions: Orphans appear to be more vulnerable in terms of material need. Children assessed in this study as being most in need were not accessing adequately many services directed at them. There is a need to extend understanding and measurement of emotional need and abuse.

  9. A study of descriptive data for orphans and non-orphans on key criteria of economic vulnerability in two municipalities in South Africa

    Directory of Open Access Journals (Sweden)

    Donald Skinner

    2013-01-01

    Full Text Available Background: It is generally assumed that orphan status increases the risk to children of a range of negative outcomes. In South Africa, death of parents due to HIV-related illness is contributing to a rapid increase in the prevalence of orphans. This paper presents descriptive data from two South African communities, namely Kopanong, in the Free State and Kanana in the North West province, characterising the differences between orphans (double, maternal and paternal and non-orphans on key criteria of social vulnerability.Objectives: The objective was to obtain a better understanding of how different types of orphans and non-orphans may differ in these key areas as a crucial starting point for addressing the devastating consequences the AIDS epidemic has on these children’s lives. While the study focuses on two specific areas these will provide insight into the general situation of orphans in South Africa.Methods: A cross-sectional census survey was conducted in the two communities of Kopanong, comprising n = 5254 households and Kanana, comprising n = 12 984 households.Results: In Kopanong, 8.2% of children had lost both parents, 19.1% had lost their father and 6.5% their mother only, whilst in Kanana the results were 6.5%, 28.1% and 3.7% respectively. Loss of both parents appeared to have a consistent impact on material need, including access to food, clothing and essential services, whilst loss of a single parent seems to have a more variable impact. At present, there are very few child headed households, but this constitutes a risk in the longer term.Conclusions: Orphans appear to be more vulnerable in terms of material need. Children assessed in this study as being most in need were not accessing adequately many services directed at them. There is a need to extend understanding and measurement of emotional need and abuse. 

  10. Emergence of orphan drugs in the United States: a quantitative assessment of the first 25 years.

    Science.gov (United States)

    Braun, M Miles; Farag-El-Massah, Sheiren; Xu, Kui; Coté, Timothy R

    2010-07-01

    The 1983 US Orphan Drug Act has stimulated the development of new therapies for rare diseases. To provide the first comprehensive overview of orphan-designated products and their indications, this article quantitatively analyses the characteristics and distribution of orphan designations and approvals by the US Food and Drug Administration from 1983 to August 2008. Of the 1,892 orphan-designated products, 326 received marketing approval, representing 247 different drugs and more than 200 different diseases. About half of the approvals had occurred by 4 years after designation was granted. The most common patient population size for orphan designations and approvals was fewer than 10,000 patients, and cancer was the most common disease area. The implications of such findings for future development and marketing of therapies for rare diseases are discussed.

  11. Prioritizing orphan proteins for further study using phylogenomics and gene expression profiles in Streptomyces coelicolor

    Directory of Open Access Journals (Sweden)

    Takano Eriko

    2011-09-01

    Full Text Available Abstract Background Streptomyces coelicolor, a model organism of antibiotic producing bacteria, has one of the largest genomes of the bacterial kingdom, including 7825 predicted protein coding genes. A large number of these genes, nearly 34%, are functionally orphan (hypothetical proteins with unknown function. However, in gene expression time course data, many of these functionally orphan genes show interesting expression patterns. Results In this paper, we analyzed all functionally orphan genes of Streptomyces coelicolor and identified a list of "high priority" orphans by combining gene expression analysis and additional phylogenetic information (i.e. the level of evolutionary conservation of each protein. Conclusions The prioritized orphan genes are promising candidates to be examined experimentally in the lab for further characterization of their function.

  12. The Acceptability of Psychosocial Support Interventions for Children Orphaned by HIV/AIDS: An Evaluation of Teacher Ratings

    Science.gov (United States)

    Chitiyo, Morgan; Changara, Darlington; Chitiyo, George

    2010-01-01

    The AIDS epidemic has created many orphans around the globe. A majority of these orphans live in sub-Saharan Africa. Children orphaned by HIV/AIDS face many daunting challenges in their struggle to cope with life. The issues they face due to the loss of their parent(s) include poverty, the stigma associated with HIV/AIDS and stress. This study…

  13. Do payers value rarity? : An analysis of the relationship between disease rarity and orphan drug prices in Europe

    NARCIS (Netherlands)

    Medic, Goran; Korchagina, Daria; Young, Katherine Eve; Toumi, Mondher; Postma, Maarten Jacobus; Wille, Micheline; Hemels, Michiel

    2017-01-01

    Background and Objective: Orphan drugs have been a highlight of discussions due to their higher prices than non-orphan drugs. There is currently no European consensus on the method of value assessment for orphan drugs. This study assessed the relationship between the prevalence of rare diseases and

  14. Novel Treatments for Rare Cancers: The U.S. Orphan Drug Act Is Delivering?A Cross-Sectional Analysis

    OpenAIRE

    Stockklausner, Clemens; Lampert, Anette; Hoffmann, Georg F.; Ries, Markus

    2016-01-01

    The U.S. Orphan Drug Act of 1983 and associated incentives have fostered delivery of novel treatments for rare cancers. Quantitative cross-sectional analysis on the U.S. Food and Drug Administration Orphan Drug Product database found that more than one-third of all orphan drug approvals address needs of patients suffering from rare cancers.

  15. Public strategies for improving eHealth integration and long-term sustainability in public health care systems: Findings from an Italian case study.

    Science.gov (United States)

    De Rosis, Sabina; Nuti, Sabina

    2017-08-08

    eHealth is expected to contribute in tackling challenges for health care systems. However, it also imposes challenges. Financing strategies adopted at national as well regional levels widely affect eHealth long-term sustainability. In a public health care system, the public actor is among the main "buyers" eHealth. However, public interventions have been increasingly focused on cost containment. How to match these 2 aspects? This article explores some central issues, mainly related to financial aspects, in the development of effective and valuable eHealth strategies in a public health care system: How can the public health care system (as a "buyer") improve long-term success and sustainability of eHealth solutions? What levers are available to match in the long period different interests of different stakeholders in the eHealth field? A case study was performed in the Region of Tuscany, Italy. According to our results, win-win strategies should be followed. Investments should take into account the need to long-term finance solutions, for sustaining changes in health care organizations for obtaining benefits. To solve the interoperability issues, the concept of the "platform approach" emerged, based on collaboration within and between organizations. Private sector as well as beneficiaries and final users of the eHealth solutions should participate in their design, provision, and monitoring. For creating value for all, the evidence gap and the financial needs could be addressed with a pull mechanism of funding, aimed at paying according to the outcomes produced by the eHealth solution, on the base of an ongoing monitoring, measurement, and evaluation of the outcomes. © 2017 The Authors. The International Journal of Health Planning and Management published by John Wiley & Sons Ltd.

  16. Longitudinal evaluation of the psychosocial wellbeing of recent orphans compared with non-orphans in a school-attending cohort in KwaZulu-Natal, South Africa.

    Science.gov (United States)

    Bachman Desilva, Mary; Skalicky, Anne M; Beard, Jennifer; Cakwe, Mandisa; Zhuwau, Tom; Simon, Jonathon L

    2012-06-01

    To assess differences in psychosocial wellbeing between recent orphans and non-orphans, we followed a cohort of 157 school-going orphans and 480 non-orphans ages 9-15 in a context of high HIV/AIDS mortality in South Africa from 2004 to 2007. Several findings were contrary to published evidence to date, as we found no difference between orphans and non-orphans in anxiety/depression symptoms, oppositional behavior, self-esteem, or resilience. Female gender, self-reported poor health, and food insecurity were the most important predictors of children's psychosocial wellbeing. Notably, girls had greater odds of reporting anxiety/depression symptoms than boys, and scored lower on self-esteem and resilience scales. Food insecurity predicted greater anxiety/depression symptoms and lower resilience. Perceived social support was a protective factor, as it was associated with lower odds of anxiety/depression symptoms, lower oppositional scores, and greater self-esteem and resilience. Our findings suggest a need to identify and strengthen psychosocial supports for girls, and for all children in contexts of AIDS-affected and economic adversity.

  17. The prevalence and cost of unapproved uses of top-selling orphan drugs.

    Directory of Open Access Journals (Sweden)

    Aaron S Kesselheim

    Full Text Available The Orphan Drug Act encourages drug development for rare conditions. However, some orphan drugs become top sellers for unclear reasons. We sought to evaluate the extent and cost of approved and unapproved uses of orphan drugs with the highest unit sales.We assessed prescription patterns for four top-selling orphan drugs: lidocaine patch (Lidoderm approved for post-herpetic neuralgia, modafinil (Provigil approved for narcolepsy, cinacalcet (Sensipar approved for hypercalcemia of parathyroid carcinoma, and imatinib (Gleevec approved for chronic myelogenous leukemia and gastrointestinal stromal tumor. We pooled patient-specific diagnosis and prescription data from two large US state pharmaceutical benefit programs for the elderly. We analyzed the number of new and total patients using each drug and patterns of reimbursement for approved and unapproved uses. For lidocaine patch, we subcategorized approved prescriptions into two subtypes of unapproved uses: neuropathic pain, for which some evidence of efficacy exists, and non-neuropathic pain.We found that prescriptions for lidocaine patch, modafinil, and cinacalcet associated with non-orphan diagnoses rose at substantially higher rates (average monthly increases in number of patients of 14.6, 1.45, and 1.58 than prescriptions associated with their orphan diagnoses (3.12, 0.24, and 0.03, respectively (p75%. Increases in lidocaine patch use for non-neuropathic pain far exceeded neuropathic pain (10.2 vs. 3.6 patients, p<0.001.In our sample, three of four top-selling orphan drugs were used more commonly for non-orphan indications. These orphan drugs treated common clinical symptoms (pain and fatigue or laboratory abnormalities. We should continue to monitor orphan drug use after approval to identify products that come to be widely used for non-FDA approved indications, particularly those without adequate evidence of efficacy.

  18. Navigating communication with families during withdrawal of life-sustaining treatment in intensive care: a qualitative descriptive study in Australia and New Zealand.

    Science.gov (United States)

    Bloomer, Melissa J; Endacott, Ruth; Ranse, Kristen; Coombs, Maureen A

    2017-03-01

    To explore how nurses navigate communication with families during withdrawal of life-sustaining treatment in intensive care. Death in the intensive care unit is seldom unexpected and often happens following the withdrawal of life-sustaining treatment. A family-centred approach to care relies on the development of a therapeutic relationship and understanding of what is happening to the patient. Whilst previous research has focused on the transition from cure to palliation and the nurse's role in supporting families, less is known about how nurses navigate communication with families during treatment withdrawal. A qualitative descriptive approach was used. Semi-structured focus groups were conducted with adult critical care nurses from four intensive care units, two in Australia and two in New Zealand. Twenty-one nurses participated in the study. Inductive content analysis revealed five key themes relating to how nurses navigate family communication: (1) establishing the WHO; (2) working out HOW; (3) judging WHEN; (4) assessing the WHAT; and (5) WHERE these skills were learnt. Navigating an approach to family communication during treatment withdrawal is a complex and multifaceted nursing activity that is known to contribute to family satisfaction with care. There is need for support and ongoing education opportunities that develop the art of communication in this frequently encountered aspect of end-of-life care. How nurses navigate communication with families during treatment withdrawal is just as important as what is communicated. Nurses need access to supports and education opportunities in order to be able to perform this vital role. © 2016 John Wiley & Sons Ltd.

  19. Orphan Sources. Extending Radiological Protection outside the Regulatory Framework

    Energy Technology Data Exchange (ETDEWEB)

    Eugenio Gil [Deputy Director for Emergency, Spanish Nuclear Safety Council (Spain)

    2006-07-01

    Radioactive sources that are not under appropriate regulatory control-Orphan sources- can result in a number of undesirable consequences including human health impacts, socio-psychological impacts, political and economic impacts, as well as environmental impacts. Many countries are now in the process of introducing the necessary measures to regain an appropriate level of control over them. For a variety of historical and economic reasons, there could already be sources in any specific country that are not within the usual regulatory system. Some of these may be known about, others may not. Therefore a national strategy is needed to ascertain the likelihood and magnitude of the issue of radioactive source control problem within a country and the priorities necessary to address the problems identified. A well-developed plan for improving control over all relevant radioactive sources tailored to the national situation will ensure optimum use of resources such as time, money and personnel. It will allow these limited resources to be allocated appropriately to ensure that control is first regained over those sources presenting the highest risks. This lecture shows a way to develop an appropriate national strategy for regaining control over orphan sources. The methodology described in this lecture is basically based in the IAEA Recommendations. (author)

  20. American Society of Clinical Oncology Multidisciplinary Cancer Management Course: Connecting Lives, Cancer Care, Education, and Compassion in Zimbabwe-A Pilot for Efforts of Sustainable Benefit?

    Science.gov (United States)

    Ndarukwa, Sandra; Nyakabau, Anna Mary; Chagpar, Anees B; Raben, David; Ndlovu, Ntokozo; Kadzatsa, Webster; Eaton, Vanessa J; Mafunda, Paida; Razis, Evangelia

    2017-08-01

    The burden of cancer in low- to middle-income countries is growing and is expected to rise dramatically while resources to manage this disease remain inadequate. All authorities for the management of cancer recommend multidisciplinary care. Educational efforts by international organizations to assist local professionals in caring for their patients tend to have a lasting impact because they empower local professionals and enhance their skills. A multidisciplinary cancer management course was designed by American Society of Clinical Oncology staff and local experts to provide a roadmap for cross-specialty interaction and coordination of care in Zimbabwe. The outcome of the course was measured through feedback obtained from participants and impact on local workforce. The cancer management course was relevant to daily practice and fostered long-lasting partnerships and collaborations. Furthermore, it resulted in a more motivated local workforce and strengthened existing multidisciplinary practices. Cancer care is in a critical state in low- to middle-income countries. Educational efforts and collaborative partnerships may provide a cost-effective strategy with sustainable benefits. A multidisciplinary approach to optimize therapy is desirable. Evaluation of the course impact after a period of 6 months to 1 year is needed to determine the sustainability and impact of such efforts.

  1. Sustainability in Health care by Allocating Resources Effectively (SHARE) 10: operationalising disinvestment in a conceptual framework for resource allocation.

    Science.gov (United States)

    Harris, Claire; Green, Sally; Elshaug, Adam G

    2017-09-08

    This is the tenth in a series of papers reporting a program of Sustainability in Health care by Allocating Resources Effectively (SHARE) in a local healthcare setting. After more than a decade of research, there is little published evidence of active and successful disinvestment. The paucity of frameworks, methods and tools is reported to be a factor in the lack of success. However there are clear and consistent messages in the literature that can be used to inform development of a framework for operationalising disinvestment. This paper, along with the conceptual review of disinvestment in Paper 9 of this series, aims to integrate the findings of the SHARE Program with the existing disinvestment literature to address the lack of information regarding systematic organisation-wide approaches to disinvestment at the local health service level. A framework for disinvestment in a local healthcare setting is proposed. Definitions for essential terms and key concepts underpinning the framework have been made explicit to address the lack of consistent terminology. Given the negative connotations of the word 'disinvestment' and the problems inherent in considering disinvestment in isolation, the basis for the proposed framework is 'resource allocation' to address the spectrum of decision-making from investment to disinvestment. The focus is positive: optimising healthcare, improving health outcomes, using resources effectively. The framework is based on three components: a program for decision-making, projects to implement decisions and evaluate outcomes, and research to understand and improve the program and project activities. The program consists of principles for decision-making and settings that provide opportunities to introduce systematic prompts and triggers to initiate disinvestment. The projects follow the steps in the disinvestment process. Potential methods and tools are presented, however the framework does not stipulate project design or conduct; allowing

  2. Sustainability in Health care by Allocating Resources Effectively (SHARE) 2: identifying opportunities for disinvestment in a local healthcare setting.

    Science.gov (United States)

    Harris, Claire; Allen, Kelly; King, Richard; Ramsey, Wayne; Kelly, Cate; Thiagarajan, Malar

    2017-05-05

    This is the second in a series of papers reporting a program of Sustainability in Health care by Allocating Resources Effectively (SHARE) in a local healthcare setting. Rising healthcare costs, continuing advances in health technologies and recognition of ineffective practices and systematic waste are driving disinvestment of health technologies and clinical practices that offer little or no benefit in order to maximise outcomes from existing resources. However there is little information to guide regional health services or individual facilities in how they might approach disinvestment locally. This paper outlines the investigation of potential settings and methods for decision-making about disinvestment in the context of an Australian health service. Methods include a literature review on the concepts and terminology relating to disinvestment, a survey of national and international researchers, and interviews and workshops with local informants. A conceptual framework was drafted and refined with stakeholder feedback. There is a lack of common terminology regarding definitions and concepts related to disinvestment and no guidance for an organisation-wide systematic approach to disinvestment in a local healthcare service. A summary of issues from the literature and respondents highlight the lack of theoretical knowledge and practical experience and provide a guide to the information required to develop future models or methods for disinvestment in the local context. A conceptual framework was developed. Three mechanisms that provide opportunities to introduce disinvestment decisions into health service systems and processes were identified. Presented in order of complexity, time to achieve outcomes and resources required they include 1) Explicit consideration of potential disinvestment in routine decision-making, 2) Proactive decision-making about disinvestment driven by available evidence from published research and local data, and 3) Specific exercises in

  3. The cost of free health care for all Kenyans: assessing the financial sustainability of contributory and non-contributory financing mechanisms.

    Science.gov (United States)

    Okungu, Vincent; Chuma, Jane; McIntyre, Di

    2017-02-27

    The need to provide quality and equitable health services and protect populations from impoverishing health care costs has pushed universal health coverage (UHC) to the top of global health policy agenda. In many developing countries where the majority of the population works in the informal sector, there are critical debates over the best financing mechanisms to progress towards UHC. In Kenya, government health policy has prioritized contributory financing strategy (social health insurance) as the main financing mechanism for UHC. However, there are currently no studies that have assessed the cost of either social health insurance (SHI) as the contributory approach or an alternative financing mechanism involving non-contributory (general tax funding) approaches to UHC in Kenya. The aim of this study was to critically assess the financial requirements of both contributory and non-contributory mechanisms to financing UHC in Kenya in the context of large informal sector populations. SimIns Basic® model, Version 2.1, 2008 (WHO/GTZ), was used to assess the feasibility of UHC in Kenya and provide estimates of financial resource needs for UHC over a 17-year period (2013-2030). Data sources included review of national and international literature on inflation, demography, macro-economy, health insurance, health services unit costs and utilization rates. The data were triangulated across geographic regions for accuracy and integrity of the simulation. SimIns models for 10 years only so data from the final year of the model was used to project for another 7 years. The 17-year period was necessary because the Government of Kenya aims to achieve UHC by 2030. The results show that SHI is financially sustainable (Sustainability in this study is used to mean that expenditure does not outstrip revenue.) (revenues and expenditure match) within the first five years of implementation, but it becomes less sustainable with time. Modelling for a non-contributory scenario, on the

  4. Circumventing 'free care' and 'shouting louder': using a health systems approach to study eye health system sustainability in government and mission facilities of north-west Tanzania.

    Science.gov (United States)

    Palmer, Jennifer J; Gilbert, Alice; Choy, Michelle; Blanchet, Karl

    2016-09-09

    Little is known about the contributions of faith-based organisations (FBOs) to health systems in Africa. In the specialist area of eye health, international and domestic Christian FBOs have been important contributors as service providers and donors, but they are also commonly critiqued as having developed eye health systems parallel to government structures which are unsustainable. In this study, we use a health systems approach (quarterly interviews, a participatory sustainability analysis exercise and a social network analysis) to describe the strategies used by eye care practitioners in four hospitals of north-west Tanzania to navigate the government, church mission and donor rules that govern eye services delivery there. Practitioners in this region felt eye care was systemically neglected by government and therefore was 'all under the NGOs', but support from international donors was also precarious. Practitioners therefore adopted four main strategies to improve the sustainability of their services: (1) maintain 'sustainability funds' to retain financial autonomy over income; (2) avoid granting government user fee exemptions to elderly patients who are the majority of service users; (3) expand or contract outreach services as financial circumstances change; and (4) access peer support for problem-solving and advocacy. Mission-based eye teams had greater freedom to increase their income from user fees by not implementing government policies for 'free care'. Teams in all hospitals, however, found similar strategies to manage their programmes even when their management structures were unique, suggesting the importance of informal rules shared through a peer network in governing eye care in this pluralistic health system. Health systems research can generate new evidence on the social dynamics that cross public and private sectors within a local health system. In this area of Tanzania, Christian FBOs' investments are important, not only in terms of the population

  5. Systematic realist review of key factors affecting the successful implementation and sustainability of the Liverpool care pathway for the dying patient.

    Science.gov (United States)

    McConnell, Tracey; O'Halloran, Peter; Porter, Sam; Donnelly, Michael

    2013-11-01

    The Liverpool Care Pathway (LCP) is recommended internationally as a best practice model for the care of patients and their families at the end of life. However, a recent national audit in the United Kingdom highlighted shortcomings; and understanding is lacking regarding the processes and contextual factors that affect implementation. To identify and investigate factors that help or hinder successful implementation and sustainability of the LCP. Electronic databases (Medline, CINAHL, British Nursing Index, Science Direct) and grey literature were searched, supplemented by citation tracking, in order to identify English language papers containing information relevant to the implementation of the LCP. Using a realist review approach, we systematically reviewed all relevant studies that focused on end of life care and integrated care pathway processes and identified theories that explained how the LCP and related programmes worked. Fifty-eight papers were included in the review. Key factors identified were: a dedicated facilitator, education and training, audit and feedback, organisational culture, and adequate resources. We discuss how these factors change behaviour by influencing the beliefs, attitudes, motivation and confidence of staff in relation to end of life care, and how contextual factors moderate behaviour change. The implementation process recommended by the developers of the LCP is necessary but not sufficient to ensure successful implementation and sustainability of the pathway. The key components of the intervention (a dedicated facilitator, education and training, audit and feedback) must be configured to influence the beliefs of staff in relation to end of life care, and increase their motivation and self-efficacy in relation to using the LCP. The support of senior managers is vital to the release of necessary resources, and a dominant culture of cure, which sees every death as a failure, works against effective communication and collaboration in

  6. Scalable, sustainable cost-effective surgical care: a model for safety and quality in the developing world, part I: challenge and commitment.

    Science.gov (United States)

    Campbell, Alex; Restrepo, Carolina; Mackay, Don; Sherman, Randy; Varma, Ajit; Ayala, Ruben; Sarma, Hiteswar; Deshpande, Gaurav; Magee, William

    2014-09-01

    With an estimated backlog of 4,000,000 patients worldwide, cleft lip and cleft palate remain a stark example of the global burden of surgical disease. The need for a new paradigm in global surgery has been increasingly recognized by governments, funding agencies, and professionals to exponentially expand care while emphasizing safety and quality. This three-part article examines the evolution of the Operation Smile Guwahati Comprehensive Cleft Care Center (GCCCC) as an innovative model for sustainable cleft care in the developing world. The GCCCC is the result of a unique public-private partnership between government, charity, and private enterprise. In 2009, Operation Smile, the Government of Assam, the National Rural Health Mission, and the Tata Group joined together to work towards the common goal of creating a center of excellence in cleft care for the region. This partnership combined expertise in medical care and training, organizational structure and management, local health care infrastructure, and finance. A state-of-the-art surgical facility was constructed in Guwahati, Assam which includes a modern integrated operating suite with an open layout, advanced surgical equipment, sophisticated anesthesia and monitoring capabilities, central medical gases, and sterilization facilities. The combination of established leaders and dreamers from different arenas combined to create a synergy of ambitions, resources, and compassion that became the backbone of success in Guwahati.

  7. The economics of orphan drug policy in the US. Can the legislation be improved?

    Science.gov (United States)

    Peabody, J W; Ruby, A; Cannon, P

    1995-11-01

    This review of the US Orphan Drug Act (ODA) 1983 outlines how the ODA is intended to stimulate orphan drug research and development of drugs for rare diseases. We also evaluate the effectiveness of the ODA in the past decade and provide recommendations for ODA improvements in the future. The economic incentives embedded in the ODA are presented in a simple economic model, in which a guarantee of market exclusivity plays a central role in encouraging firms to pursue the development of orphan products. Some evidence suggests that this provision has been a major impetus for the rise in orphan drug applications and designations in the last decade. Market exclusivity is the key incentive for orphan drug research, and should be retained. Concerns about a limited number of highly successful 'blockbuster' orphan drugs should be evaluated in terms of the useful economic incentives. In the future, exceptionally high profits could be limited by more precise evaluation of disease prevalence, elasticity of demand, and the other uses of orphan compounds. We further recommend an expansion of the ODA tax credits and research grants programme and targeting of 'priority' diseases. We conclude that the ODA has been a valuable legislative initiative, but it can be strengthened with some simple extensions of the current incentives that it contains.

  8. Caregiver alcohol use and mental health among children orphaned by HIV/AIDS in South Africa.

    Science.gov (United States)

    Jardin, Charles; Marais, Lochner; Bakhshaie, Jafar; Skinner, Donald; Neighbors, Clayton; Zvolensky, Michael; Sharp, Carla

    2017-03-01

    Research in the developed world suggests that parental alcohol use negatively impacts child mental health. However, little research has examined these relations among children in the developing world and no studies to date have done so in the context of AIDS-orphanhood. Therefore, the present study tested the interactive effect of AIDS-orphan status with caregiver alcohol use on child mental health. The sample included 742 children (51.2% female; M age   = 9.18; age range: 7-11 years; 29.8 AIDS-orphans; 36.8% orphaned by causes other than AIDS; 33.4% non-orphaned) recruited from Mangaung in the Free State Province of South Africa. Child mental health was assessed via child self-report, caregiver, and teacher reports; and caregiver alcohol use via self-report. Path analyses, via structural equation modeling, revealed significant direct effects for AIDS-orphan status on caregiver-reported child mental health; and for caregiver alcohol-use problems on teacher-reported child mental health. However, the interaction effect of AIDS-orphan status with caregiver alcohol use did not reach significance on all three reports of child mental health problems. These results suggest that orphan status and caregiver alcohol use may independently relate to mental health problems in children and that the effects of both should be considered in the context of the mental health needs of children in AIDS-affected countries.

  9. Providing mentoring for orphans and vulnerable children in internally displaced person camps: The case of northern Nigeria

    Directory of Open Access Journals (Sweden)

    Nathan H. Chiroma

    2016-10-01

    Full Text Available The challenge of orphans and vulnerable children (OVC has become central to the response of many organisations (UN, UNHCR, AONN, UNAIDS, UNFPA, UNICEF, etc. today. The number of OVC throughout northern Nigeria is growing as a result of the Boko Haram pandemic. Mostly, this is caused by the death of parents who have been killed by the insurgents. It has been estimated that by 2015, 200 000 children under the age of 18 had been orphaned by the Boko Haram insurgents. As the number of OVC is growing, it is becoming more and more difficult for their communities to address all their needs, including their need for positive role models and mentors. This article discusses the role that mentoring can play in the development of OVC affected by violence in northern Nigeria, specifically those in internally displaced person (IDP camps. This article argued that one approach to improve the holistic care of OVC in IDP camps in northern Nigeria is through the use of mentors.

  10. Providing mentoring for orphans and vulnerable children in internally displaced person camps: The case of northern Nigeria

    Directory of Open Access Journals (Sweden)

    Nathan H. Chiroma

    2016-02-01

    Full Text Available The challenge of orphans and vulnerable children (OVC has become central to the response of many organisations (UN, UNHCR, AONN, UNAIDS, UNFPA, UNICEF, etc. today. The number of OVC throughout northern Nigeria is growing as a result of the Boko Haram pandemic. Mostly, this is caused by the death of parents who have been killed by the insurgents. It has been estimated that by 2015, 200 000 children under the age of 18 had been orphaned by the Boko Haram insurgents. As the number of OVC is growing, it is becoming more and more difficult for their communities to address all their needs, including their need for positive role models and mentors. This article discusses the role that mentoring can play in the development of OVC affected by violence in northern Nigeria, specifically those in internally displaced person (IDP camps. This article argued that one approach to improve the holistic care of OVC in IDP camps in northern Nigeria is through the use of mentors.

  11. The prevalence and cost of unapproved uses of top-selling orphan drugs.

    Science.gov (United States)

    Kesselheim, Aaron S; Myers, Jessica A; Solomon, Daniel H; Winkelmayer, Wolfgang C; Levin, Raisa; Avorn, Jerry

    2012-01-01

    The Orphan Drug Act encourages drug development for rare conditions. However, some orphan drugs become top sellers for unclear reasons. We sought to evaluate the extent and cost of approved and unapproved uses of orphan drugs with the highest unit sales. We assessed prescription patterns for four top-selling orphan drugs: lidocaine patch (Lidoderm) approved for post-herpetic neuralgia, modafinil (Provigil) approved for narcolepsy, cinacalcet (Sensipar) approved for hypercalcemia of parathyroid carcinoma, and imatinib (Gleevec) approved for chronic myelogenous leukemia and gastrointestinal stromal tumor. We pooled patient-specific diagnosis and prescription data from two large US state pharmaceutical benefit programs for the elderly. We analyzed the number of new and total patients using each drug and patterns of reimbursement for approved and unapproved uses. For lidocaine patch, we subcategorized approved prescriptions into two subtypes of unapproved uses: neuropathic pain, for which some evidence of efficacy exists, and non-neuropathic pain. We found that prescriptions for lidocaine patch, modafinil, and cinacalcet associated with non-orphan diagnoses rose at substantially higher rates (average monthly increases in number of patients of 14.6, 1.45, and 1.58) than prescriptions associated with their orphan diagnoses (3.12, 0.24, and 0.03, respectively (p75%). Increases in lidocaine patch use for non-neuropathic pain far exceeded neuropathic pain (10.2 vs. 3.6 patients, porphan drugs were used more commonly for non-orphan indications. These orphan drugs treated common clinical symptoms (pain and fatigue) or laboratory abnormalities. We should continue to monitor orphan drug use after approval to identify products that come to be widely used for non-FDA approved indications, particularly those without adequate evidence of efficacy.

  12. How transformational learning promotes caring, consultation and creativity, and ultimately contributes to sustainable development: Lessons from the Partnership for Education and Research about Responsible Living (PERL) network

    Science.gov (United States)

    Thoresen, Victoria Wyszynski

    2017-12-01

    Oases of learning which are transformative and lead to significant behavioural change can be found around the globe. Transformational learning has helped learners not only to understand what they have been taught but also to re-conceptualise and re-apply this understanding to their daily lives. Unfortunately, as many global reports indicate, inspirational transformational learning approaches for sustainable development are rare and have yet to become the norm - despite calls for such approaches by several outstanding educators and organisations. This article examines three learning approaches developed by the network of the Partnership for Education and Research about Responsible Living (PERL). These approaches are structured around core elements of transformative learning for sustainable development, yet focus particularly on the ability to care, consult with others and be creative. They seem to depend on the learners' ability to articulate their perceptions of sustainable development in relation to their own values and to identify how these are actualised in their daily life. Together with other core elements of transformative learning, an almost magical (not precisely measurable) synergy then emerges. The intensity of this synergy appears to be directly related to the individual learner's understanding of the contradictions, interlinkages and interdependencies of modern society. The impact of this synergy seems to be concurrent with the extent to which the learner engages in a continual learning process with those with whom he/she has contact. The findings of this study suggest that mainstreaming transformational learning for sustainable development in ways that release the "magic synergy of creative caring" can result in the emergence of individuals who are willing and able to move from "business as usual" towards more socially just, economically equitable, and environmentally sensitive behaviour.

  13. How transformational learning promotes caring, consultation and creativity, and ultimately contributes to sustainable development: Lessons from the Partnership for Education and Research about Responsible Living (PERL) network

    Science.gov (United States)

    Thoresen, Victoria Wyszynski

    2017-11-01

    Oases of learning which are transformative and lead to significant behavioural change can be found around the globe. Transformational learning has helped learners not only to understand what they have been taught but also to re-conceptualise and re-apply this understanding to their daily lives. Unfortunately, as many global reports indicate, inspirational transformational learning approaches for sustainable development are rare and have yet to become the norm - despite calls for such approaches by several outstanding educators and organisations. This article examines three learning approaches developed by the network of the Partnership for Education and Research about Responsible Living (PERL). These approaches are structured around core elements of transformative learning for sustainable development, yet focus particularly on the ability to care, consult with others and be creative. They seem to depend on the learners' ability to articulate their perceptions of sustainable development in relation to their own values and to identify how these are actualised in their daily life. Together with other core elements of transformative learning, an almost magical (not precisely measurable) synergy then emerges. The intensity of this synergy appears to be directly related to the individual learner's understanding of the contradictions, interlinkages and interdependencies of modern society. The impact of this synergy seems to be concurrent with the extent to which the learner engages in a continual learning process with those with whom he/she has contact. The findings of this study suggest that mainstreaming transformational learning for sustainable development in ways that release the "magic synergy of creative caring" can result in the emergence of individuals who are willing and able to move from "business as usual" towards more socially just, economically equitable, and environmentally sensitive behaviour.

  14. A model of effective health policy: the 1983 Orphan Drug Act.

    Science.gov (United States)

    Reaves, Natalie D

    2003-01-01

    There was a new pharmaceutical policy enacted in 1983 known as the Orphan Drug Act. It was designed to increase the availability of drugs used to treat rare diseases. In the decade prior to 1983, only ten orphan drugs had been marketed. Since 1983, over 200 orphan drugs have been marketed and over 800 have entered the regulatory pipeline. This paper examines a case of government regulation that industry, patients and politicians view as a resounding success. This policy should serve as a model of how to encourage innovation in other under-served areas.

  15. Characteristics of orphan drug applications that fail to achieve marketing approval in the USA.

    Science.gov (United States)

    Heemstra, Harald E; Leufkens, Hubert G M; Rodgers, R P Channing; Xu, Kui; Voordouw, Bettie C G; Braun, M Miles

    2011-01-01

    The US Orphan Drug Act has fostered the development of drugs for patients with rare diseases by granting 'orphan designations', although several orphan drugs for which a marketing application has been submitted to the FDA have failed to obtain approval. This study identified the clinical trial design, the level of experience of the sponsor and the level of interaction with the FDA to be associated with non-approval. Sponsors, therefore, should engage in dialogue with the FDA and thoughtfully design pivotal clinical trials in accordance with FDA guidance documents. Copyright © 2010 Elsevier Ltd. All rights reserved.

  16. Community-based capital cash transfer to support orphans in Western Kenya

    DEFF Research Database (Denmark)

    Skovdal, Morten; Mwasiaji, W.; Morrison, J.

    2008-01-01

    promising method of supporting orphans and carers. Qualitative data were obtained from 15 orphans and 26 caregivers in Bondo District, Kenya, beneficiaries of a CCCT programme run by a partnership between the community, the government social services department and a foreign donor. Our findings suggest......Various types of 'cash transfer' are currently receiving much attention as a way of helping orphans and vulnerable children in Africa. Drawing on a qualitative study conducted in Western Kenya, this paper points to the strategy of community-based capital cash transfers (CCCT) as a particularly...

  17. The orphan nuclear hormone receptor ERRβ controls rod photoreceptor survival

    Science.gov (United States)

    Onishi, Akishi; Peng, Guang-Hua; Poth, Erin M.; Lee, Daniel A.; Chen, Jichao; Alexis, Uel; de Melo, Jimmy; Chen, Shiming; Blackshaw, Seth

    2010-01-01

    Mutation of rod photoreceptor-enriched transcription factors is a major cause of inherited blindness. We identified the orphan nuclear hormone receptor estrogen-related receptor β (ERRβ) as selectively expressed in rod photoreceptors. Overexpression of ERRβ induces expression of rod-specific genes in retinas of wild-type as well as Nrl−/− mice, which lack rod photoreceptors. Mutation of ERRβ results in dysfunction and degeneration of rods, whereas inverse agonists of ERRβ trigger rapid rod degeneration, which is rescued by constitutively active mutants of ERRβ. ERRβ coordinates expression of multiple genes that are rate-limiting regulators of ATP generation and consumption in photoreceptors. Furthermore, enhancing ERRβ activity rescues photoreceptor defects that result from loss of the photoreceptor-specific transcription factor Crx. Our findings demonstrate that ERRβ is a critical regulator of rod photoreceptor function and survival, and suggest that ERRβ agonists may be useful in the treatment of certain retinal dystrophies. PMID:20534447

  18. Understanding sustained domestic violence identification in maternal and child health nurse care: process evaluation from a 2-year follow-up of the MOVE trial.

    Science.gov (United States)

    Hooker, Leesa; Small, Rhonda; Taft, Angela

    2016-03-01

    To investigate factors contributing to the sustained domestic violence screening and support practices of Maternal and Child Health nurses 2 years after a randomized controlled trial. Domestic violence screening by healthcare professionals has been implemented in many primary care settings. Barriers to screening exist and screening rates remain low. Evidence for longer term integration of nurse screening is minimal. Trial outcomes showed sustained safety planning behaviours by intervention group nurses. Process evaluation in 2-year follow-up of a cluster randomized controlled trial. Evaluation included a repeat online nurse survey and 14 interviews (July-September 2013). Survey analysis included comparison of proportionate group difference between arms and between trial baseline and 2 year follow-up surveys. Framework analysis was used to assess qualitative data. Normalization Process Theory informed evaluation design and interpretation of results. Survey response was 77% (n = 123/160). Sustainability of nurse identification of domestic violence appeared to be due to greater nurse discussion and domestic violence disclosure by women, facilitated by use of a maternal health and well-being checklist. Over time, intervention group nurses used the maternal checklist more at specific maternal health visits and found the checklist the most helpful resource assisting their domestic violence work. Nurses' spoke of a degree of 'normalization' to domestic violence screening that will need constant investment to maintain. Sustainable domestic violence screening and support outcomes can be achieved in an environment of comprehensive, nurse designed and theory driven implementation. Continuing training, discussion and monitoring of domestic violence work is needed to retain sustainable practices. © 2015 John Wiley & Sons Ltd.

  19. Management strategies to effect change in intensive care units: lessons from the world of business. Part III. Effectively effecting and sustaining change.

    Science.gov (United States)

    Gershengorn, Hayley B; Kocher, Robert; Factor, Phillip

    2014-03-01

    Reaping the optimal rewards from any quality improvement project mandates sustainability after the initial implementation. In Part III of this three-part ATS Seminars series, we discuss strategies to create a culture for change, improve cooperation and interaction between multidisciplinary teams of clinicians, and position the intensive care unit (ICU) optimally within the hospital environment. Coaches are used throughout other industries to help professionals assess and continually improve upon their practice; use of this strategy is as of yet infrequent in health care, but would be easily transferable and potentially beneficial to ICU managers and clinicians alike. Similarly, activities focused on improving teamwork are commonplace outside of health care. Simulation training and classroom education about key components of successful team functioning are known to result in improvements. In addition to creating an ICU environment in which individuals and teams of clinicians perform well, ICU managers must position the ICU to function well within the hospital system. It is important to move away from the notion of a standalone ("siloed") ICU to one that is well integrated into the rest of the institution. Creating a "pull-system" (in which participants are active in searching out needed resources and admitting patients) can help ICU managers both provide better care for the critically ill and strengthen relationships with non-ICU staff. Although not necessary, there is potential upside to creating a unified critical care service to assist with achieving these ends.

  20. FORUM: Is Ecotourism Sustainable?

    Science.gov (United States)

    Wall

    1997-07-01

    / It is legitimate to ask whether and in what form tourism might contribute to sustainable development. This is not the same as sustainable tourism which, as a single-sector approach to development, may overlook important linkages with other sectors. If tourism is to contribute to sustainable development, then it must be economically viable, ecologically sensitive and culturally appropriate. Ecotourism is often advocated as being a sustainable form of tourism but imprecision in terminology clouds basic issues and there are strong economic, ecological, and cultural reasons for believing that, even in its purest forms, ecotourism is likely to present substantial challenges to destination areas, particularly if it competes for scarce resources and displaces existing uses and users. Sustainable tourism and ecotourism are not synonyms, many forms of ecotourism may not be sustainable, and if ecotourism is to contribute to sustainable development, then careful planning and management will be required.KEY WORDS: Ecotourism; Sustainable development; Development; Tourism

  1. Measuring intensive care unit performance after sustainable growth rate reform: An example with the National Quality Forum metrics.

    Science.gov (United States)

    Nguyen, Albert P; Hyder, Joseph A; Wanta, Brendan T; Stelfox, Henry T; Schmidt, Ulrich

    2016-12-01

    Performance measurement is essential for quality improvement and is inevitable in the shift to value-based payment. The National Quality Forum is an important clearinghouse for national performance measures in health care in the United States. We reviewed the National Quality Forum library of performance measures to highlight measures that are relevant to critical care medicine, and we describe gaps and opportunities for the future of performance measurement in critical care medicine. Crafting performance measures that address core aspects of critical care will be challenging, as current outcome and performance measures have problems with validity. Future quality measures will likely focus on interdisciplinary measures across the continuum of patient care. Copyright © 2016 Elsevier Inc. All rights reserved.

  2. Limitations of drug registries to evaluate orphan medicinal products for the treatment of lysosomal storage disorders

    NARCIS (Netherlands)

    Hollak, Carla E. M.; Aerts, Johannes M. F. G.; Aymé, Ségolène; Manuel, Jeremy

    2011-01-01

    Orphan drugs are often approved under exceptional circumstances, requiring submission of additional data on safety and effectiveness through registries. These registries are mainly focused on one drug only and data is frequently incomplete. Some registries also address phenotypic heterogeneity and

  3. Genomics versus orphan nuclear receptors--a half-time report.

    Science.gov (United States)

    Willson, Timothy M; Moore, John T

    2002-06-01

    Following the successful cloning of the orphan nuclear receptors during the 1990s we entered the 21st century with knowledge of the full complement of human nuclear receptors. Many of these proteins are ligand-activated transcription factors that act as the cognate receptors for steroid, retinoid, and thyroid hormones. In addition to these well characterized endocrine hormone receptors, there are a large number of orphan receptors of which less is known about the nature and function of their ligands. The task of deciphering the physiological function of these orphan receptors has been aided by a new generation of genomic technologies. Through application of chemical, structural, and functional genomics, several orphan nuclear receptors have emerged as pharmaceutical drug targets for the treatment of important human diseases. The significant progress that has been made in the functional analysis of more than half of the nuclear receptor gene family provides an opportunity to review the impact of genomics in this endeavor.

  4. Using multi-criteria decision analysis to appraise orphan drugs: a systematic review.

    Science.gov (United States)

    Friedmann, Carlotta; Levy, Pierre; Hensel, Paul; Hiligsmann, Mickaël

    2017-12-20

    Multi-criteria decision analysis (MCDA) could potentially solve current methodological difficulties in the appraisal of orphan drugs. Areas covered: We provide an overview of the existing evidence regarding the use of MCDA in the appraisal of orphan drugs worldwide. Three databases (Pubmed, Embase, Web of Science) were searched for English, French and German literature published between January 2000 and April 2017. Full-text articles were supplemented with conference abstracts. A total of seven articles and six abstracts were identified. Expert commentary: The literature suggests that MCDA is increasingly being used in the context of appraising orphan drugs. It has shown itself to be a flexible approach with the potential to assist in decision-making regarding reimbursement for orphan drugs. However, further research regarding its application must be conducted.

  5. Emerging roles of orphan nuclear receptors in regulation of innate immunity.

    Science.gov (United States)

    Jin, Hyo Sun; Kim, Tae Sung; Jo, Eun-Kyeong

    2016-11-01

    Innate immunity constitutes the first line of defense against pathogenic and dangerous insults. However, it is a double-edged sword, as it functions in both clearance of infection and inflammatory damage. It is therefore important that innate immune responses are tightly controlled to prevent harmful excessive inflammation. Nuclear receptors (NRs) are a family of transcription factors that play critical roles in various physiological responses. Orphan NRs are a subset of NRs for which the ligands and functions are unclear. Accumulating evidence has revealed that orphan NRs play essential roles in innate immune responses to prevent pathogenic inflammatory responses and to enhance antimicrobial host defenses. In this review, we describe current knowledge on the roles and mechanisms of orphan NRs in the regulation of innate immune responses. Discovery of new functions of orphan NRs would facilitate development of novel preventive and therapeutic strategies against human inflammatory diseases.

  6. Safety-related regulatory actions for orphan drugs in the US and EU: a cohort study.

    Science.gov (United States)

    Heemstra, Harald E; Giezen, Thijs J; Mantel-Teeuwisse, Aukje K; de Vrueh, Remco L A; Leufkens, Hubert G M

    2010-02-01

    Drugs for rare diseases, so-called orphan drugs, are often intended for serious or chronically debilitating diseases. Safety information is more limited at the time of approval for orphan drugs as a result of various factors, such as the limited number of patients in clinical trials, quality of the clinical trials and special approval procedures. Several studies have been conducted on safety-related regulatory actions for drugs, but none of these have specifically focused on orphan drugs. To determine the frequency and nature of safety-related regulatory actions for orphan drugs in the US and EU. This cohort study examined publicly available data from the websites of US and EU regulatory authorities on orphan drugs approved in the US and/or the EU between January 2000 and December 2007. The main outcome measures were the nature, frequency and timing of safety-related regulatory actions, defined as (i) safety withdrawals; (ii) 'black-box' warnings; and (iii) written communications to healthcare professionals issued by the US FDA or the European Medicines Agency between January 2000 and June 2008. Ninety-five orphan drugs were approved during the study period (75 in the US, 44 in the EU, and 24 in both regions). Ten products (10.5%) received a safety-related regulatory action. No safety withdrawals, four black-box warnings and 12 written communications were identified. The probability of a first safety-related regulatory action for orphan drugs was 20.3% after 8 years of follow-up. Orphan drugs approved by accelerated approval (relative risk [RR] 3.32; 95% CI 1.06, 10.42), oncological products (RR 7.83; 95% CI 0.96, 63.82) and products for gastrointestinal and metabolism indications (RR 10.44; 95% CI 1.25, 87.27) may have a higher risk for a safety-related regulatory action. The probability of a first safety-related regulatory action for an orphan drug was slightly lower than that reported in the literature for biologicals in one study and new molecular entities in

  7. The Impossible Quest – Problems with Diligent Search for Orphan Works

    OpenAIRE

    Schroff, S.; Favale, Marcella; A. Bertoni

    2017-01-01

    Digital technologies allow unprecedented preservation and sharing of world-wide cultural heritage. Public and private players are increasingly entering the scene with mass digitisation projects that will make this possible. In Europe, legislative action has been taken to allow cultural institutions to include in their online collections copyright works whose owners are either unknown or non-locatable (“orphan works”). However, according to the Orphan Works Directive, cultural institutions mus...

  8. Oral lesions and dental status among institutionalized orphans in Yemen: A matched case-control study

    Directory of Open Access Journals (Sweden)

    Sadeq Ali Al-Maweri

    2014-01-01

    Full Text Available Objectives: The aim of this study was to assess the prevalence of oral mucosal lesions (OMLs and dental caries and to evaluate oral health practices among institutionalized orphan-children in Sana′a city, Yemen. Subjects and Methods: A sample of 202 institutionalized male-orphan-children in the main orphanage in Sana′a city, were matched to 202 non-orphan schoolchildren. Clinical examination included assessment of OMLs based on standard international diagnostic criteria and evaluation of dental status using the Decayed/decayed, Missed/missed and Filled/filled (DMFT/dmft index according to World Health Organization recommendations. Demographic data and oral hygiene practices were obtained by interviewing each subject using special questionnaire form. Results: Majority of children were in the 12-15 year age group. Nine types of lesions were reported among orphans; the most common lesions were fissured tongue (24.3%, herpes labialis (7.9% and traumatic ulcers (2.5%. The occurrence of herpes labialis was found to be significantly higher in orphans than in controls (P < 0.01. The prevalence of dental caries was insignificantly lower among the orphans (84.7% compared with the non-orphans (89.61%; P = 0.136. The mean dmft score was significantly lower in orphans than in controls (2.28 vs. 3.82; P = 0.001. Conclusions: The institutionalized children in this orphanage had a high prevalence of OMLs but low prevalence of dental caries, though they revealed poor oral hygiene practices. Effective oral health promotion strategies need to be implemented to improve the oral health and oral health practices of children living in orphanages.

  9. More than the loss of a parent: potentially traumatic events among orphaned and abandoned children

    OpenAIRE

    Kathryn, Whetten; Ostermann, Jan; Whetten, Rachel; O'Donnell, Karen; Thielman, Nathan

    2011-01-01

    This study examines rates of potentially traumatic events and associated anxiety and emotional/behavioral difficulties among 1,258 orphaned and abandoned children in 5 low and middle-income countries. The study quantifies the types of events the children experienced and demonstrates that anxiety and emotional/behavioral difficulties increase with additional event exposure. As policies for orphaned and abandoned children are being implemented, this study helps policy makers and providers recog...

  10. Health promotion needs of Hammanskraal families with adolescents orphaned by HIV/AIDS

    Directory of Open Access Journals (Sweden)

    N C van Wyk

    2008-01-01

    Full Text Available Health promotion is regarded as the cornerstone of good health. It is the action expected from individuals and families in order to better their own health situation. Health promotion is an art and science (Edelman & Mandle, 2002:16 that is integrated into the primary health care to reduce existing health problems. The purpose of the research on which this article is reporting, was to explore and describe the health promotion needs of families with adolescents orphaned by human immunodeficiency virus or acquired immune deficiency syndrome (HIV/AIDS. The research was located within a qualitative paradigm that is both exploratory and descriptive. Eight families who were purposely selected participated in the research process. Qualitative methods, such as group interviews and field notes were utilised to collect data. The health promotion needs of the families with adolescents orphaned by HIV/AIDS were explored and described. Tesch’s analysis process, which entails a series of steps, was followed (Creswell, 2003:192. Themes, categories and subcategories that form the central focus of health promotion needs emerged during the data analysis. These themes,categories and subcategories are used to develop guidelines for health promotion. Opsomming Die bevordering van gesondheid is die hoeksteen van gesondheid. Dit is die aksie wat van individue en familie verwag word, sodat hulle hul eie gesondheidstoestand kan verbeter. Die bevordering van gesondheid is ‘n kuns en ‘n wetenskap, wat geïntegreer is in primêre gesondheidsorg, om bestaande gesondheidsprobleme te verminder (Edelman & Mandle, 2002:16. Die doel van die navorsing, waarna in hierdie artikel verwys word, was om uit te vind wat die gesondheidsorgbehoeftes van families, met adolessente wat wees gelaat is as gevolg van menslike immunogebrek virus of verworve immuungebrek sindroom (MIV/VIGS, is, en dit te beskryf. Die navorsing was binne die raamwerk van ‘n kwalitatiewe paradigma, wat

  11. The paediatric rheumatologist and orphan disease – a story without happy ending

    Directory of Open Access Journals (Sweden)

    Justyna Roszkiewicz

    2016-07-01

    Full Text Available Orphan diseases are not a common challenge in the everyday practice of the rheumatologist. Despite their extremely rare occurrence one of the patients under our care developed one of them – neuronal ceroid lipofuscinosis, the most frequent neurodegenerative disease observed in the paediatric population. We report a case of 2-year-old girl diagnosed with oligoarticular form of juvenile idiopathic arthritis treated in our Department with steroids and methotrexate and staying in the stage of disease remission. During routine checkups at Outpatient Clinic we observed progressive deterioration of girls neurological condition resulting in ataxia, gait disturbances with no rheumatological cause behind and speech impairment. The appearance of the symptoms was accompanied by frequent episodes of epileptic seizures, with little clinical improvement on combined antiepileptic treatment. Magnetic resonance imaging that we performed showed a picture highly suggestive of neuronal ceroid lipofuscinosis – atrophy of the patients cerebrum and cerebellum. Genetic testing conducted resulted in the diagnosis of late infantile neuronal ceroid lipofuscinosis (LINCL.

  12. Findings from the Caring International Research Collaborative: Using Caring Science To Assess and Support Food Sustainability Systems for Women Living with HIV/AIDS in a Village in Cameroon

    Directory of Open Access Journals (Sweden)

    Relindis Oyebog Moffor

    2015-06-01

    Full Text Available This study proposes Caring Science as an innovative way to facilitate food systems sustainability in areas of the world that continue to suffer from food insecurity and food shortages. An interdisciplinary group that included a nurse, an agronomist, an environmentalist, and a statistical analyst collaborated to study food sustainability in a village in Bambui, Cameroon. The village was composed of only women and children, and all the women were diagnosed with HIV/AIDS. This interdisciplinary approach not only met the food needs of the village, but, within the assessment process, identified other needs as well. This interdisciplinary approach facilitated holistic assessment of food, finances, personal self-worth and health.

  13. Dual-functional Polyurea Microcapsules for Chronic Wound Care Dressings: Sustained Drug Delivery and Non-leaching Infection Control

    Science.gov (United States)

    He, Wei

    A new design of dual-functional polyurea microcapsules was proposed for chronic wound dressings to provide both non-leaching infection control and sustained topical drug delivery functionalities. Quaternary ammonium functionalized polyurea microcapsules (MCQs) were synthesized under mild conditions through an interfacial crosslinking reaction between branched polyethylenimine (PEI) and 2,4-toluene diisocyanate (TDI) in a dimethylformamide/cyclohexane emulsion. An in-situ modification method was developed to endow non-leaching surface antimicrobial properties to MCQs via bonding antimicrobial surfactants to surface isocyanate residues on the polyurea shells. The resultant robust MCQs with both non-leaching antimicrobial properties and sustained drug releasing properties have potential applications in medical textiles, such as chronic wound dressings, for infection control and drug delivery.

  14. 21st century leadership challenge: creating and sustaining healthy, healing work cultures and integrated service at the point of care.

    Science.gov (United States)

    Wesorick, Bonnie

    2002-01-01

    This article addresses the call coming from both those who give and those who receive health care to create healthy, healing work cultures and integrated service at the point of care. The legacy of leadership will be determined by the ability to co-create the best places to practice and receive care. The complexity and nature of the work and the outcomes are based on almost two decades of "wisdom from the field" coming from a unique consortium of more than 100 rural, community, and university settings, as well as feedback from colleagues in more than 1,000 organizations.

  15. Budget impact analysis of orphan drugs in Belgium: estimates from 2008 to 2013.

    Science.gov (United States)

    Denis, Alain; Mergaert, Lut; Fostier, Christel; Cleemput, Irina; Simoens, Steven

    2010-01-01

    This article aims to calculate the impact of orphan drugs on the Belgian drug budget in 2008 and to forecast its impact over the following 5 years. The 2008 budget impact was calculated by triangulating information derived from multiple Belgian data sources. The 2008-2013 budget impact analysis was based on three scenarios reflecting different levels of growth in the number of registered orphan drugs in the European Union, the number of drugs reimbursed in Belgium, and the average annual cost per patient per drug in Belgium. The orphan drug budget impact amounted to €66.2 million (or 5% of the Belgian hospital drug budget) in 2008. The impact would increase to €130-204 million in 2013, depending on the scenario. This static analysis measured orphan drug costs only, assuming that other components of health expenditure do not change over time. The analysis showed that the budget impact of orphan drugs in Belgium is substantial and rising, thereby putting pressure on total drug expenditure. Policy options to address the rising budget impact include pricing linked to return on investment, risk-sharing arrangements and re-appraisal of orphan drug status if additional indications are approved.

  16. Saving mothers and newborns in communities: strengthening community midwives to provide high quality essential newborn and maternal care in Baluchistan, Pakistan in a financially sustainable manner.

    Science.gov (United States)

    Mumtaz, Zubia; Cutherell, Andrea; Bhatti, Afshan

    2014-04-06

    To address it's persistently high maternal mortality rate of 276/100,000 live births, the government of Pakistan created a new cadre of community based midwives (CMW). One expectation is that CMWs will improve access to maternal health services for underserved women. Recent research shows the CMWs have largely failed to establish midwifery practices, because CMW's lack of skills, both clinical and entrepreneurial and funds necessary to develop their practice infrastructure and logistics. Communities also lack trust in their competence to conduct safe births. To address these issues, the Saving Mothers and Newborn (SMNC) intervention will implement three key elements to support the CMWs to establish their private practices: (1) upgrade CMW clinical skills (2) provide business-skills training and small loans (3) generate demand for CMW services using cellular phone SMS technology and existing women's support groups. This 3-year project aims to investigate whether CMWs enrolled in this initiative are providing the essential maternal and newborn health care to women and children living in districts of Quetta, and Gwadar in a financially self-sustaining manner. Specifically the research will use quasi-experimental impact assessment to document whether the SMNC initiative is having an impact on CMW services uptake, financial analysis to assess if the initiative enabled CMWs to develop financially self-sustainable practices and observation methods to assess the quality of care the CMWs are providing. A key element of the SMNC initiative - the provision of business skills training and loans to establish private practices - is an innovative initiative in Pakistan and little is known about its effectiveness. This research will provide emperic evidence of the effectiveness of the intervention as well as contribute to the body of evidence around potential solutions to improve sustainable coverage of high impact Maternal, Neonatal and Child Health interventions in vulnerable

  17. Challenges and opportunities in building a sustainable rural primary care workforce in alignment with the Affordable Care Act: the WWAMI program as a case study.

    Science.gov (United States)

    Allen, Suzanne M; Ballweg, Ruth A; Cosgrove, Ellen M; Engle, Kellie A; Robinson, Lawrence R; Rosenblatt, Roger A; Skillman, Susan M; Wenrich, Marjorie D

    2013-12-01

    The authors examine the potential impact of the Patient Protection and Affordable Care Act (ACA) on a large medical education program in the Northwest United States that builds the primary care workforce for its largely rural region. The 42-year-old Washington, Wyoming, Alaska, Montana, and Idaho (WWAMI) program, hosted by the University of Washington School of Medicine, is one of the nation's most successful models for rural health training. The program has expanded training and retention of primary care health professionals for the region through medical school education, graduate medical education, a physician assistant training program, and support for practicing health professionals.The ACA and resulting accountable care organizations (ACOs) present potential challenges for rural settings and health training programs like WWAMI that focus on building the health workforce for rural and underserved populations. As more Americans acquire health coverage, more health professionals will be needed, especially in primary care. Rural locations may face increased competition for these professionals. Medical schools are expanding their positions to meet the need, but limits on graduate medical education expansion may result in a bottleneck, with insufficient residency positions for graduating students. The development of ACOs may further challenge building a rural workforce by limiting training opportunities for health professionals because of competing demands and concerns about cost, efficiency, and safety associated with training. Medical education programs like WWAMI will need to increase efforts to train primary care physicians and increase their advocacy for student programs and additional graduate medical education for rural constituents.

  18. Career planning for the non-clinical workforce - an opportunity to develop a sustainable workforce in primary care.

    Science.gov (United States)

    Tavabie, Jacqueline A; Simms, Jacqueline M

    2017-03-01

    Many health and social care systems worldwide have been developing a variety of navigator and signposting roles to help patients negotiate care through increasingly complex systems and multiple provider agencies. This UK project aims to explore, through a combination of job description review and workshops of stakeholders, the common competencies and features of non-clinical roles. The information is collated to develop common job descriptions at four key levels. These form the basis for a career pathway supported by portfolio-based educational programmes, embracing Apprenticeship Training Programmes. The programmes have the potential to support recruitment and retention of an increasingly skilled workforce to move between traditional health and social care provider boundaries. This offers the opportunity to release clinicians from significant administrative workload and support patients in an integrated care system.

  19. Caring touch as a bodily anchor for patients after sustaining a motor vehicle accident with minor or no physical injuries - a mixed methods study.

    Science.gov (United States)

    Airosa, Fanny; Arman, Maria; Sundberg, Tobias; Öhlén, Gunnar; Falkenberg, Torkel

    2016-03-22

    Patients who sustain a motor vehicle accident may experience long-term distress, even if they are uninjured or only slightly injured. There is a risk of neglecting patients with minor or no physical injuries, which might impact future health problems. The aim of this study was to explore patients' subjective experiences and perspectives on pain and other factors of importance after an early nursing intervention consisting of "caring touch" (tactile massage and healing touch) for patients subjected to a motor vehicle accident with minor or no physical injuries. A mixed method approach was used. The qualitative outcomes were themes derived from individual interviews. The quantitative outcomes were measured by visual analogue scale for pain (VAS, 0-100), sense of coherence (SOC), post-traumatic stress (IES-R) and health status (EQ-5D index and EQ-5D self-rated health). Forty-one patients of in total 124 eligible patients accepted the invitation to participate in the study. Twenty-seven patients completed follow-up after 6 months whereby they had received up to eight treatments with either tactile massage or healing touch. Patients reported that caring touch may assist in trauma recovery by functioning as a physical "anchor" on the patient's way of suffering, facilitating the transition of patients from feeling as though their body is "turned off" to becoming "awake". By caring touch the patients enjoyed a compassionate care and experience moments of pain alleviation. The VAS pain ratings significantly decreased both immediately after the caring touch treatment sessions and over the follow-up period. The median scores for VAS (p injuries, a caring touch intervention is associated with patients' report of decreased pain and improved wellbeing up to 6 months after the accident. ClinicalTrials.gov Id: NCT02610205 . Date 25 November 2015.

  20. Sustainability of a community-based anti-retroviral care delivery model - a qualitative research study in Tete, Mozambique.

    Science.gov (United States)

    Rasschaert, Freya; Decroo, Tom; Remartinez, Daniel; Telfer, Barbara; Lessitala, Faustino; Biot, Marc; Candrinho, Baltazar; Van Damme, Wim

    2014-01-01

    To overcome patients' reported barriers to accessing anti-retroviral therapy (ART), a community-based delivery model was piloted in Tete, Mozambique. Community ART Groups (CAGs) of maximum six patients stable on ART offered cost- and time-saving benefits and mutual psychosocial support, which resulted in better adherence and retention outcomes. To date, Médecins Sans Frontières has coordinated and supported these community-driven activities. To better understand the sustainability of the CAG model, we developed a conceptual framework on sustainability of community-based programmes. This was used to explore the data retrieved from 16 focus group discussions and 24 in-depth interviews with different stakeholder groups involved in the CAG model and to identify factors influencing the sustainability of the CAG model. We report the findings according to the framework's five components. (1) The CAG model was designed to overcome patients' barriers to ART and was built on a concept of self-management and patient empowerment to reach effective results. (2) Despite the progressive Ministry of Health (MoH) involvement, the daily management of the model is still strongly dependent on external resources, especially the need for a regulatory cadre to form and monitor the groups. These additional resources are in contrast to the limited MoH resources available. (3) The model is strongly embedded in the community, with patients taking a more active role in their own healthcare and that of their peers. They are considered as partners in healthcare, which implies a new healthcare approach. (4) There is a growing enabling environment with political will and general acceptance to support the CAG model. (5) However, contextual factors, such as poverty, illiteracy and the weak health system, influence the community-based model and need to be addressed. The community embeddedness of the model, together with patient empowerment, high acceptability and progressive MoH involvement

  1. Factors affecting the successful implementation and sustainability of the Liverpool Care Pathway for dying patients: a realist evaluation.

    Science.gov (United States)

    McConnell, Tracey; O'Halloran, Peter; Donnelly, Michael; Porter, Sam

    2015-03-01

    The Liverpool Care Pathway (LCP) for the dying patient was designed to improve end-of-life care in generalist healthcare settings. Controversy has led to its withdrawal in some jurisdictions. The main objective of this research was to identify the influences that facilitated or hindered successful LCP implementation. An organisational case study using realist evaluation in one health and social care trust in Northern Ireland. Two rounds of semistructured interviews were conducted with two policymakers and 22 participants with experience and/or involvement in management of the LCP during 2011 and 2012. Key resource inputs included facilitation with a view to maintaining LCP 'visibility', reducing anxiety among nurses and increasing their confidence regarding the delivery of end-of-life care; and nurse and medical education designed to increase professional self-efficacy, and reduce misuse and misunderstanding of the LCP. Key enabling contexts were consistent senior management support; ongoing education and training tailored to the needs of each professional group; and an organisational cultural change in the hospital setting that encompassed end-of-life care. There is a need to appreciate the organisationally complex nature of intervening to improve end-of-life care. Successful implementation of evidence-based interventions for end-of-life care requires commitment to planning, training and ongoing review that takes account of different perspectives, institutional hierarchies and relationships, and the educational needs of professional disciplines. There is a need also to recognise that medical consultants require particular support in their role as gatekeepers and as a lead communication channel with patients and their relatives. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.

  2. The government of Kenya cash transfer for orphaned and vulnerable children: cross-sectional comparison of household and individual characteristics of those with and without.

    Science.gov (United States)

    Ayuku, David; Embleton, Lonnie; Koech, Julius; Atwoli, Lukoye; Hu, Liangyuan; Ayaya, Samuel; Hogan, Joseph; Nyandiko, Winstone; Vreeman, Rachel; Kamanda, Allan; Braitstein, Paula

    2014-09-20

    The 'Cash Transfer to Orphans and Vulnerable Children' (CT-OVC) in Kenya is a government-supported program intended to provide regular and predictable cash transfers (CT) to poor households taking care of OVC. CT programs can be an effective means of alleviating poverty and facilitating the attainment of an adequate standard of living for people's health and well-being and other international human rights. The objective of this analysis was to compare the household socioeconomic status, school enrolment, nutritional status, and future outlook of orphaned and separated children receiving the CT compared to those not receiving a CT. This project analyzes baseline data from a cohort of orphaned and separated children aged living in 300 randomly selected households (HH) in 8 Locations of Uasin Gishu County, Kenya. Baseline data were analyzed using multivariable logistic and Poisson regression comparing children in CT-HH vs. non-CT HH. Odds ratios are adjusted (AOR) with 95% confidence intervals (CI) for guardian age and sex, child age and sex, and intra-HH correlation. Included in this analysis were data from 1481 children and adolescents in 300 HH (503 participants in CT, 978 in non-CT households). Overall there were 922 (62.3%) single orphans, 324 (21.9%) double orphans, and 210 (14.2%) participants had both parents alive and were living with them. Participants in CT-HH were less likely to have ≥2 pairs of clothes compared to non-CT HH (AOR: 0.32, 95% CI: 0.16-0.63). Those in CT HH were less likely to have missed any days of school in the preceding month (AOR: 0.62, 95% CI: 0.42-0.94) and those aged <1-18 years in CT-HH were less likely to have height stunting for their age (AOR: 0.65, 95% CI: 0.47-0.89). Participants aged at least 10 years in CT-HH were more likely to have a positive future outlook (AOR: 1.72, 95% CI: 1.12-2.65). Children and adolescents in households receiving the CT-OVC appear to have better nutritional status, school attendance, and optimism

  3. The effect of contralesional limb activation training and sustained attention training for self-care programmes in unilateral spatial neglect.

    Science.gov (United States)

    Wilson, F. Colin; Manly, Tom; Coyle, Donna; Robertson, Ian H.

    2000-01-01

    PURPOSE: To evaluate the effectiveness of two rehabilitation techniques for unilateral spatial neglect, contra-lesional limb activation and sustained attention training, on impaired activities of daily living. METHODS: Two single case, time-series designs incorporating baseline, intervention and post-intervention phases. RESULTS: Significant improvements were observed in both neuropsychological measures and in the independent performance of everyday activities coincident with the start of training. The benefits were well maintained during the post-training period. CONCLUSIONS: The results support the use of the two techniques in achieving functional goals for unilateral neglect patients.

  4. Post-marketing access to orphan drugs: a critical analysis of health technology assessment and reimbursement decision-making considerations

    Directory of Open Access Journals (Sweden)

    Iskrov G

    2014-01-01

    Full Text Available Georgi Iskrov, Rumen Stefanov Department of Social Medicine and Public Health, Medical University of Plovdiv, Plovdiv, Bulgaria Abstract: This study aims to explore the current rationale of post-marketing access to orphan drugs. As access to orphan medicinal products depends on assessment and appraisal by health authorities, this article is focused on health technology assessment (HTA and reimbursement decision-making considerations for orphan drugs. A critical analysis may identify important factors that could predetermine the combined outcomes of these two processes. Following this objective, an analytical framework was developed, comprising three overlaying issues: to outline what is currently done and what needs to be done in the field of HTA of orphan drugs, to synthesize important variables relevant to the reimbursement decision-making about orphan drugs, and to unveil relationships between theory and practice. Methods for economic evaluation, cost-effectiveness threshold, budget impact, uncertainty of evidence, criteria in reimbursement decision-making, and HTA research agenda are all explored and discussed from an orphan drug perspective. Reimbursement decision-making for orphan drugs is a debate of policy priorities, health system specifics, and societal attitudes. Health authorities need to pursue a multidisciplinary analysis on a range of criteria, ensuring an explicit understanding of the trade-offs for decisions related to eligibility for reimbursement. The only reasonable way to accept a higher valuation of orphan drug benefits is if these are demonstrated empirically. Rarity means that the quality of orphan drug evidence is not the same as for conventional therapies. Closing this gap is another crucial point for the timely access to these products. The generation of evidence goes far beyond pre-market authorization trials and requires transnational cooperation and coordination. Early constructive dialogue among orphan drug

  5. Post-marketing access to orphan drugs: a critical analysis of health technology assessment and reimbursement decision-making considerations

    OpenAIRE

    Iskrov, Georgi; Stefanov,Rumen

    2014-01-01

    Georgi Iskrov, Rumen Stefanov Department of Social Medicine and Public Health, Medical University of Plovdiv, Plovdiv, Bulgaria Abstract: This study aims to explore the current rationale of post-marketing access to orphan drugs. As access to orphan medicinal products depends on assessment and appraisal by health authorities, this article is focused on health technology assessment (HTA) and reimbursement decision-making considerations for orphan drugs. A critical analysis may identify importa...

  6. Positive care? HIV and residential care for children in South Africa ...

    African Journals Online (AJOL)

    Responses to the HIV epidemic leading to an increase in the number of residential care facilities for children across sub-Saharan Africa have prompted concerns that large numbers of orphaned children are being placed in institutional care. There is little empirical research into the role that institutions are playing in the ...

  7. Don’t let up: implementing and sustaining change in a new post-licensure education model for developing extended role practitioners involved in arthritis care

    Directory of Open Access Journals (Sweden)

    Lundon K

    2015-08-01

    Full Text Available Katie Lundon,1,3 Rachel Shupak,1–3 Sonya Canzian,4 Ed Ziesmann,5 Rayfel Schneider,6,71Office of Continuing Professional Development, Faculty of Medicine, University of Toronto, 2Division of Rheumatology, St Michael's Hospital, 3Department of Medicine, University of Toronto, 4Trauma/Neurosurgery and Mobility Programs, St Michael's Hospital, 5Programs and Services, The Arthritis Society, 6Division of Rheumatology, The Hospital for Sick Children, 7Department of Paediatrics, University of Toronto, Toronto, ON, CanadaKey message: Across a 9-year period, the Advanced Clinician Practitioner in Arthritis Care program has achieved a set of short-term “wins” giving direction and momentum to the development of new roles for health care practitioners providing arthritis care.Implications: This is a viable model for post-licensure training offered to multiple allied health professionals to support the development of competent extended role practitioners (extended scope practice. Challenges at this critical juncture include: retain focus, drive, and commitment; develop academic and financial partnerships transferring short-term success to long-term sustainability; advanced, context-driven, system-level evaluation including fiscal outcome; health care policy adaptation to new human health resource development.Supporting evidence: Success includes: completed 2-year health services research evaluating 37 graduates; leadership, innovation, educational excellence, and human health resource benefit awards; influential publications/presentations addressing post-licensure education/outcome, interprofessional collaboration, and improved patient care. Keywords: human health resource development, post-licensure education, arthritis, extended role practitioners, allied health professionals

  8. Preeclampsia – will Orphan Drug Status facilitate innovative biological therapies?

    Directory of Open Access Journals (Sweden)

    Sinuhe eHahn

    2015-02-01

    Full Text Available It is generally accepted that development of novel therapies to treat pregnancy-relates disorders, such as preeclampsia, is hampered to the paucity of research funding. Hence, it is with great interest to become aware of at least three novel therapeutic approaches for the treatment of this disorder, exploiting either the anticoagulant activity of antithrombin, the free radical scavenging activity of alpha-1-microglobulin, or the regenerative capacity of placenta-derived mesenchymal stem cells. As these projects are being carried out by small biotech enterprises, the question arises of how they are able to fund such undertakings. A novel strategy adopted by two of these companies is that they successfully petitioned US and EU agencies in order that preeclampsia be accepted in the register of rare or orphan diseases. This provides a number of benefits including market exclusivity, assistance with clinical trials and dedicated funding schemes. Other strategies to supplement meager research funds, especially to test novel approaches, could be crowdfunding, a venture which relies on intimate interaction with advocacy groups. In other words, preeclampsia meets Facebook. Perhaps similar strategies can be adopted to examine novel therapies targeting either the imbalance in angiogenic growth factors, complement activation, reduced levels of placenta protein 13 or excessive neutrophil activation evident in preeclampsia.

  9. Concession of Brazilian Federal Highways: Orphan Assets Evidence

    Directory of Open Access Journals (Sweden)

    Samuel de Rezende Salgado

    2017-01-01

    Full Text Available One of the uses of public service concession contracts in Brazil is in the road infrastructure sector, existing at the federal level 21 roads’ concession contracts, totaling approximately 10 thousand kilometers, which is 12.6% of the federal road network. Whereas in this type of contract the government does not transfer ownership of the asset, but only access to the concessionaire for the operation of public services, this study aims to determine in which entity (public or private are registered the federal roads, object of the concession contracts. To address the research question, the financial statements of 21 utility companies or controlling group were analyzed, as well the balance sheet of the National Land Transportation Agency (ANTT, all for the year 2014. The study findings show that the Brazilian federal highways are not recorded in public statements or in the financial statements of utility companies, providing evidence that these infrastructure assets meet the definition of orphan assets. Thus, the net worth of the ANTT is not adequately represented in its balance sheet.

  10. Cutting-edge technology may yield elephants in Orphan basin

    Energy Technology Data Exchange (ETDEWEB)

    Reid, W.

    2006-10-15

    Controlled source electromagnetic survey (CSEM) technology may soon supply vital information to oil companies about Newfoundland's offshore basins. The technology shoots low-frequency electromagnetic signals at the sea-floor to measure resistivity. Natural gas, crude oil and water each have a particular strength to resist the power of an electromagnetic signal, and leave a unique signature. To collect data, the electromagnetic pulse emitter is towed back and forth over an area of seabed potentially holding hydrocarbons. Connected to the ship by a long tether, the emitter hangs approximately 30 to 50 m above the ocean floor, and reaches depths of 2.4 km. The sea floor has 36 receivers anchored to it in a grid of concrete blocks that dissolve within 3 months of installation. The test blocks are first dropped overboard to verify current speed and strength in order to calculate exactly where on the water's surface the concrete blocks will be lowered. The Canada Newfoundland and Labrador Offshore Petroleum Board (CNLOPB) has deemed the technology environmentally safe. Eight land parcels have now been leased for exploration in the Orphan Basin and are expected to receive approval for seismic and electromagnetic surveys. Industry players have shown unusual optimism about the basin's potential, which is estimated to contain 4 oilfields containing a billion barrels of oil each. 2 figs.

  11. Preeclampsia - will orphan drug status facilitate innovative biological therapies?

    Science.gov (United States)

    Hahn, Sinuhe

    2015-01-01

    It is generally accepted that the development of novel therapies to treat pregnancy-related disorders, such as preeclampsia, is hampered by the paucity of research funding. Hence, it is with great interest to become aware of at least three novel therapeutic approaches for the treatment of this disorder: exploiting either the anticoagulant activity of antithrombin, the free radical scavenging activity of alpha-1-microglobulin, or the regenerative capacity of placenta-derived mesenchymal stem cells. As these projects are being carried out by small biotech enterprises, the question arises of how they are able to fund such undertakings. A novel strategy adopted by two of these companies is that they successfully petitioned US and EU agencies in order that preeclampsia is accepted in the register of rare or orphan diseases. This provides a number of benefits including market exclusivity, assistance with clinical trials, and dedicated funding schemes. Other strategies to supplement meager research funds, especially to test novel approaches, could be crowdfunding, a venture that relies on intimate interaction with advocacy groups. In other words, preeclampsia meets Facebook. Perhaps similar strategies can be adopted to examine novel therapies targeting either the imbalance in pro- or anti-angiogenic growth factors, complement activation, reduced levels of placenta protein 13, or excessive neutrophil activation evident in preeclampsia.

  12. Collaborative care for patients with Parkinson’s disease: Combining an offline professional network with an online health community for the sustainable provision of care

    NARCIS (Netherlands)

    Riel, A.C.R. van; Visser, L.M.; Eijk, M. van der; Faber, M.J.; Munneke, M.; Bloem, B.R.

    2013-01-01

    Healthcare service providers in most Western societies are currently confronted with substantial challenges. They must continuously improve the quality of care, while at the same time being under substantial pressure from governments and insurance companies to reduce their costs and improve

  13. Correlates of poor health among orphans and abandoned children in less wealthy countries: the importance of caregiver health

    National Research Council Canada - National Science Library

    Thielman, Nathan; Ostermann, Jan; Whetten, Kathryn; Whetten, Rachel; O'Donnell, Karen

    2012-01-01

    ... abandoned. We investigated relationships between the health of orphaned and abandoned children (OAC) and child, caregiver, and household characteristics among randomly selected OAC in five countries...

  14. Ethical imperatives of timely access to orphan drugs: is possible to reconcile economic incentives and patients' health needs?

    Science.gov (United States)

    Rodriguez-Monguio, R; Spargo, T; Seoane-Vazquez, E

    2017-01-05

    More than 6,800 rare diseases and conditions have been identified in the US, which affect 25-30 million Americans. In 1983, the US Congress enacted the Orphan Drug Act (ODA) to encourage the development and marketing of drugs to treat rare diseases and conditions. This study analyzed all orphan designations and FDA approvals since 1983 through 2015, discussed the effectiveness of incentives for the development of treatments for rare diseases, and reflected on the ethical imperatives for timely access to orphan drugs. Study data were derived from the Food and Drug Administration (FDA) Orange Book and the Office of Orphan Drugs Development. A search was conducted to assess literature on the ethical principles and economic incentives for the development of orphan drugs. In the period 1983-2015, the FDA granted 3,647 orphan drug designations and 554 orphan drug approvals. The orphan drug approvals corresponded to 438 different brand names. Cancer was the therapeutic area with the highest number of approvals. The increased number of patients with rare diseases and the growth in the cost of orphan drugs pose a significant economic burden for patients, public programs and private third party payers. Regulatory differences to qualify for orphan designation and various population thresholds employed by the FDA and the European Medicines Agency lead to further unmet health needs for patients with rare diseases and aggravate health inequities. There is no societal consensus on the population and economic thresholds, the drug effectiveness indicator(s), or the societal value to be placed for the approval and reimbursement of orphan drugs. Orphan drug development and marketing in the US concentrate in few therapeutic areas. Despite the increase in the number of FDA approved orphan drugs, the unmet needs of patients with rare diseases evidence that the current incentives are not efficiently stimulating orphan drug development. There is need to balance economic incentives to

  15. Orphan Children in the Educational Space of Russia (Following a Survey on Regional Guarantees of Educational Opportunities and Support for Orphans at all Levels of Education

    Directory of Open Access Journals (Sweden)

    Oslon V.N.,

    2016-04-01

    Full Text Available The article analyzes the results of a survey on regional executive government officials in the education as well as teachers and heads of educational institutions of all levels about providing of high quality education guarantees for orphans in accordance with the “National Strategy for Action on Children in the 2012–2017”. Author used eco-dynamic approach, the concept of adaptive education, and the idea of social inclusion – exclusion as the methodological basis of the study. The survey shows that orphan children have special educational needs and require to an adaptive learning system throughout the length of educating. Providing the educational opportunities is associated with objective difficulties such as the lack of adaptive education system and untrained teachers as well as subjective problems (e.g. the social exclusion attitudes of persons responsible for teaching and facilitating the integration, as well as the psychological effects of early maternal deprivation and institutionalization of orphan children. The article describes measures respondents consider necessary for the successful integration of orphan children in a wide educational environment.

  16. How to Sustain Interprofessional Learning and Practice: Messages for Higher Education and Health and Social Care Management

    Science.gov (United States)

    Meads, Geoffrey; Jones, Isabel; Harrison, Rachel; Forman, Dawn; Turner, Warren

    2009-01-01

    The principal aim of this article is to promote the more effective integration of interprofessional learning with practice developments in health and social care. Ten specific recommendations are offered for the successful management of recent central policies for collaboration at the interface of the higher education and service sectors.…

  17. An analysis of blood and body fluid exposures sustained by house officers, medical students, and nursing personnel on acute-care general medical wards: a prospective study.

    Science.gov (United States)

    Stotka, J L; Wong, E S; Williams, D S; Stuart, C G; Markowitz, S M

    1991-10-01

    To prospectively examine the epidemiology of blood and body fluid exposures sustained by medicine housestaff, medical school students, registered nurses (RNs), licensed practical nurses (LPNs), and nurses' aides (NAs) on general medicine wards and to define problem areas that may be amenable to change. Daily data collection during 9 months using a self-reporting questionnaire. General medical wards in 2 tertiary referral hospitals. Medicine housestaff/students and nursing personnel. Physicians reported 644 exposures, of which 98 (15.2%), 296 (46.0%), and 250 (38.8%) were sustained by medicine residents, interns, and students, respectively. Blood contact occurred with 591 (91.8%) exposures. For physicians, 575 (89.3%) exposures occurred during venipuncture, intravenous catheter manipulation, and arterial punctures. Interns and students most commonly incurred exposures during venipunctures and intravenous manipulations; residents commonly were exposed during emergent intravenous catheter placements. Five-hundred-twenty-two (81%) exposures occurred between 7 A.M. and 7 P.M. During 524 (81.4%) exposures, physicians were not using barrier devices. Nurses reported 235 exposures, of which 140 (59.6%), 23 (9.8%), and 72 (30.6%) were sustained by RNs, LPNs, and NAs, respectively. RN exposures commonly occurred during intravenous manipulations and glucometer fingersticks. LPNs and NAs incurred a higher percentage of exposures during nonprocedural patient care. Blood contact and wound drainage accounted for 167 (71.1%) and 31 (13.2%) exposures, respectively. Exposures to blood and body fluids frequently are incurred by healthcare workers on general medical wards. Efforts to reduce these exposures should be directed not only at improving procedural skills of healthcare workers for venipunctures, intravenous catheter insertions, and glucometer fingersticks, but also in increasing barrier use during procedural and nonprocedural tasks.

  18. Improving care quality and preventing maltreatment in institutional care – a feasibility study with caregivers

    Directory of Open Access Journals (Sweden)

    Katharin eHermenau

    2015-07-01

    Full Text Available Institutionalized children in low-income countries often face maltreatment and inadequate caregiving. In addition to prior traumatization and other childhood adversities in the family of origin, abuse and neglect in institutional care are linked to various mental health problems. By providing a manualized training workshop for caregivers, we aimed at improving care quality and preventing maltreatment in institutional care. In Study 1, 29 participating caregivers rated feasibility and efficacy of the training immediately before, directly after, and three months following the training workshop. The results showed high demand, good feasibility, high motivation and acceptance of caregivers. They reported improvements in caregiver-child relationships, as well as in the children’s behavior. Study 2 assessed exposure to maltreatment and the mental health of 28 orphans living in one institution in which all caregivers had been trained. The children were interviewed 20 months before, one month before, and three months after the training. Children reported a decrease in physical maltreatment and assessments showed a decrease in mental health problems. Our approach seems feasible under challenging circumstances and provides first hints for its efficacy. These promising findings call for further studies testing the efficacy and sustainability of this maltreatment prevention approach.

  19. Impact of protective factors on resilience of grandparent carers fostering orphans and non-orphans in Zimbabwe.

    Science.gov (United States)

    Mhaka-Mutepfa, Magen; Mpofu, Elias; Cumming, Robert

    2015-04-01

    This study sought to explore the impact of protective factors, health, and well-being on resilience of grandparents fostering orphans. Data were collected from grandparents (N = 327; M age = 62.4; SD = 11.2) in Zimbabwe using a survey instrument comprising the Resilience Scale and World Health Organization Quality of Life Questionnaire (WHOQOL-BREF). Data were analyzed using hierarchical regression, predicting resilience from demographics, personal and social assets, health, and well-being. Protective factors associated with resilience were personal assets (high self-esteem, problem-solving skills, and mastery) and social assets (social networks and spirituality). Grandparents with higher coping skills, younger age, and high socioeconomic status (SES) had superior personal competences for resilience than peers with lower self-rated personal attributes. Grandparents with good physical and mental health had higher resilience profiles. Positive emotions and good health experienced by resilient grandparent carers function as protective factors to reduce the magnitude of adversity to individuals and assist them to cope well with caregiving. © The Author(s) 2014.

  20. Promoting children's sustainable access to early schooling in Africa: reflections on the roles of parents in their children's early childhood care and education.

    Science.gov (United States)

    Ngwaru, Jacob Marriote

    2014-01-01

    Sub-Saharan Africa has predominantly rural populations unable to offer children sustainable access to early literacy and childhood care and education. Children's literacy development starts very early in life through participation and experiences in the home and preschool. My research in rural Zimbabwe, Kenya, Uganda, and Tanzania shows that the transition from home to school is compromised by acute barriers such as lack of parental participation, lack of encouragement and support from teachers, and unavailability of learning materials. However, rural homes and communities are well endowed with a stock of practices, knowledge, and skills relevant to the promotion of literacy development. In this chapter, I reflect on how to empower parents to draw on knowledge and resources within the local context to become better involved in their children's education while also empowering teachers to better recognize and take advantage of local knowledge and resources to enrich instruction and enhance meaningful learning. © 2014 Wiley Periodicals, Inc.

  1. Primary care treatment of depression in the elderly: a double-blind, multi-centre study of flupenthixol ('Fluanxol') and sustained-release amitriptyline.

    Science.gov (United States)

    Høstmaelingen, H J; Asskilt, O; Austad, S G; Fjellheim, J; Høstmaelingen, E A; Kristiansen, P H; Olsen, T I; Skotte, T; Ofsti, E

    1989-01-01

    A multi-centre general practice study was carried out to compare flupenthixol and a sustained-release preparation of amitriptyline in the primary care treatment of depression in the elderly. Fifty-one clinically depressed patients, aged 65 years or over, were allocated at random to one of the two treatment groups in this 4-week double-blind, double-dummy study. On entry, patients received either a 0.5 mg flupenthixol tablet in the morning and a placebo capsule at night (25 patients) or a 25 mg sustained-release amitriptyline capsule at night and a placebo tablet in the morning (26 patients), but at the end of the first or second weeks the dosage could be doubled according to the assessed clinical need. Fourteen patients in each treatment group had their dosages doubled. Patient assessment was undertaken on study entry and after 1, 2 and 4 weeks of treatment using a 0 to 3 scale global assessment and the Montgomery Asberg Depression Rating Scale; side-effects were recorded on the UKU Scale. After 4-weeks' treatment, over 80% of patients in each group had improved and in the flupenthixol group there was additionally a noticeable and highly significant reduction in symptom severity after only 1 week of treatment. Patients treated with flupenthixol had fewer and milder side-effects.

  2. Identifying ligands at orphan GPCRs: current status using structure-based approaches.

    Science.gov (United States)

    Ngo, Tony; Kufareva, Irina; Coleman, James Lj; Graham, Robert M; Abagyan, Ruben; Smith, Nicola J

    2016-10-01

    GPCRs are the most successful pharmaceutical targets in history. Nevertheless, the pharmacology of many GPCRs remains inaccessible as their endogenous or exogenous modulators have not been discovered. Tools that explore the physiological functions and pharmacological potential of these 'orphan' GPCRs, whether they are endogenous and/or surrogate ligands, are therefore of paramount importance. Rates of receptor deorphanization determined by traditional reverse pharmacology methods have slowed, indicating a need for the development of more sophisticated and efficient ligand screening approaches. Here, we discuss the use of structure-based ligand discovery approaches to identify small molecule modulators for exploring the function of orphan GPCRs. These studies have been buoyed by the growing number of GPCR crystal structures solved in the past decade, providing a broad range of template structures for homology modelling of orphans. This review discusses the methods used to establish the appropriate signalling assays to test orphan receptor activity and provides current examples of structure-based methods used to identify ligands of orphan GPCRs. Linked Articles This article is part of a themed section on Molecular Pharmacology of G Protein-Coupled Receptors. To view the other articles in this section visit http://onlinelibrary.wiley.com/doi/10.1111/bph.v173.20/issuetoc. © 2016 The British Pharmacological Society.

  3. Budget impact analysis of drugs for ultra-orphan non-oncological diseases in Europe.

    Science.gov (United States)

    Schlander, Michael; Adarkwah, Charles Christian; Gandjour, Afschin

    2015-02-01

    Ultra-orphan diseases (UODs) have been defined by a prevalence of less than 1 per 50,000 persons. However, little is known about budget impact of ultra-orphan drugs. For analysis, the budget impact analysis (BIA) had a time horizon of 10 years (2012-2021) and a pan-European payer's perspective, based on prevalence data for UODs for which patented drugs are available and/or for which drugs are in clinical development. A total of 18 drugs under patent protection or orphan drug designation for non-oncological UODs were identified. Furthermore, 29 ultra-orphan drugs for non-oncological diseases under development that have the potential of reaching the market by 2021 were found. Total budget impact over 10 years was estimated to be €15,660 and €4965 million for approved and pipeline ultra-orphan drugs, respectively (total: €20,625 million). The analysis does not support concerns regarding an uncontrolled growth in expenditures for drugs for UODs.

  4. Rapid identification of sequences for orphan enzymes to power accurate protein annotation.

    Directory of Open Access Journals (Sweden)

    Kevin R Ramkissoon

    Full Text Available The power of genome sequencing depends on the ability to understand what those genes and their proteins products actually do. The automated methods used to assign functions to putative proteins in newly sequenced organisms are limited by the size of our library of proteins with both known function and sequence. Unfortunately this library grows slowly, lagging well behind the rapid increase in novel protein sequences produced by modern genome sequencing methods. One potential source for rapidly expanding this functional library is the "back catalog" of enzymology--"orphan enzymes," those enzymes that have been characterized and yet lack any associated sequence. There are hundreds of orphan enzymes in the Enzyme Commission (EC database alone. In this study, we demonstrate how this orphan enzyme "back catalog" is a fertile source for rapidly advancing the state of protein annotation. Starting from three orphan enzyme samples, we applied mass-spectrometry based analysis and computational methods (including sequence similarity networks, sequence and structural alignments, and operon context analysis to rapidly identify the specific sequence for each orphan while avoiding the most time- and labor-intensive aspects of typical sequence identifications. We then used these three new sequences to more accurately predict the catalytic function of 385 previously uncharacterized or misannotated proteins. We expect that this kind of rapid sequence identification could be efficiently applied on a larger scale to make enzymology's "back catalog" another powerful tool to drive accurate genome annotation.

  5. Rapid Identification of Sequences for Orphan Enzymes to Power Accurate Protein Annotation

    Science.gov (United States)

    Ojha, Sunil; Watson, Douglas S.; Bomar, Martha G.; Galande, Amit K.; Shearer, Alexander G.

    2013-01-01

    The power of genome sequencing depends on the ability to understand what those genes and their proteins products actually do. The automated methods used to assign functions to putative proteins in newly sequenced organisms are limited by the size of our library of proteins with both known function and sequence. Unfortunately this library grows slowly, lagging well behind the rapid increase in novel protein sequences produced by modern genome sequencing methods. One potential source for rapidly expanding this functional library is the “back catalog” of enzymology – “orphan enzymes,” those enzymes that have been characterized and yet lack any associated sequence. There are hundreds of orphan enzymes in the Enzyme Commission (EC) database alone. In this study, we demonstrate how this orphan enzyme “back catalog” is a fertile source for rapidly advancing the state of protein annotation. Starting from three orphan enzyme samples, we applied mass-spectrometry based analysis and computational methods (including sequence similarity networks, sequence and structural alignments, and operon context analysis) to rapidly identify the specific sequence for each orphan while avoiding the most time- and labor-intensive aspects of typical sequence identifications. We then used these three new sequences to more accurately predict the catalytic function of 385 previously uncharacterized or misannotated proteins. We expect that this kind of rapid sequence identification could be efficiently applied on a larger scale to make enzymology’s “back catalog” another powerful tool to drive accurate genome annotation. PMID:24386392

  6. Profitability and Market Value of Orphan Drug Companies: A Retrospective, Propensity-Matched Case-Control Study.

    Science.gov (United States)

    Hughes, Dyfrig A; Poletti-Hughes, Jannine

    2016-01-01

    Concerns about the high cost of orphan drugs has led to questions being asked about the generosity of the incentives for development, and associated company profits. We conducted a retrospective, propensity score matched study of publicly-listed orphan companies. Cases were defined as holders of orphan drug market authorisation in Europe or the USA between 2000-12. Control companies were selected based on their propensity for being orphan drug market authorisation holders. We applied system General Method of Moments to test whether companies with orphan drug market authorization are valued higher, as measured by the Tobin's Q and market to book value ratios, and are more profitable based on return on assets, than non-orphan drug companies. 86 companies with orphan drug approvals in European (4), USA (61) or both (21) markets were matched with 258 controls. Following adjustment, orphan drug market authorization holders have a 9.6% (95% confidence interval, 0.6% to 18.7%) higher return on assets than non-orphan drug companies; Tobin's Q was higher by 9.9% (1.0% to 19.7%); market to book value by 15.7% (3.1% to 30.0%) and operating profit by 516% (CI 19.8% to 1011%). For each additional orphan drug sold, return on assets increased by 11.1% (0.6% to 21.3%), Tobin's Q by 2.7% (0.2% to 5.2%), and market to book value ratio by 5.8% (0.7% to 10.9%). Publicly listed pharmaceutical companies that are orphan drug market authorization holders are associated with higher market value and greater profits than companies not producing treatments for rare diseases.

  7. Beyond Adoption: A New Framework for Theorizing and Evaluating Nonadoption, Abandonment, and Challenges to the Scale-Up, Spread, and Sustainability of Health and Care Technologies.

    Science.gov (United States)

    Greenhalgh, Trisha; Wherton, Joseph; Papoutsi, Chrysanthi; Lynch, Jennifer; Hughes, Gemma; A'Court, Christine; Hinder, Susan; Fahy, Nick; Procter, Rob; Shaw, Sara

    2017-11-01

    Many promising technological innovations in health and social care are characterized by nonadoption or abandonment by individuals or by failed attempts to scale up locally, spread distantly, or sustain the innovation long term at the organization or system level. Our objective was to produce an evidence-based, theory-informed, and pragmatic framework to help predict and evaluate the success of a technology-supported health or social care program. The study had 2 parallel components: (1) secondary research (hermeneutic systematic review) to identify key domains, and (2) empirical case studies of technology implementation to explore, test, and refine these domains. We studied 6 technology-supported programs-video outpatient consultations, global positioning system tracking for cognitive impairment, pendant alarm services, remote biomarker monitoring for heart failure, care organizing software, and integrated case management via data sharing-using longitudinal ethnography and action research for up to 3 years across more than 20 organizations. Data were collected at micro level (individual technology users), meso level (organizational processes and systems), and macro level (national policy and wider context). Analysis and synthesis was aided by sociotechnically informed theories of individual, organizational, and system change. The draft framework was shared with colleagues who were introducing or evaluating other technology-supported health or care programs and refined in response to feedback. The literature review identified 28 previous technology implementation frameworks, of which 14 had taken a dynamic systems approach (including 2 integrative reviews of previous work). Our empirical dataset consisted of over 400 hours of ethnographic observation, 165 semistructured interviews, and 200 documents. The final nonadoption, abandonment, scale-up, spread, and sustainability (NASSS) framework included questions in 7 domains: the condition or illness, the technology

  8. Haitian orphan population and protective factors against caries

    Directory of Open Access Journals (Sweden)

    Madelyn Rea

    2016-04-01

    Full Text Available Objective In Haiti, families were torn apart and children were left orphans after the 2010 earthquake. In the aftermath of this natural disaster many children were relocated to orphanages across the country and adopted internationally. Years later these children find themselves catching up in growth physically, mentally and emotionally after an extremely traumatic event during a crucial time in their health development. Another important marker of development is the primary dentition and the presence of caries.  We report estimates of early childhood caries (ECC frequency, risk factors and quality of health among Haitian children. Methods Medical and dental professionals conducted a descriptive cross sectional study through the Pittsburgh Kids Foundation and their partnership with IDADEE children’s home, EBAC orphanage and New Vision Children’s home. Vital signs were taken and recorded to create a health/growth history for each child. Brief dental screenings were conducted and topical fluoride treatments were administered. Risk factors and quality of health information was obtained from discussions with the caregivers present. The children and caregivers were given oral hygiene education and supplies (i.e. toothbrushes, toothpaste, floss.  Results Physical exams and dental screenings were conducted on the 40 children ages 3-10 years of age living in the IDADEE children’s home. Two children had cavitated teeth. Eight children had teeth that were stained. Four children had evidence of dental trauma. 26 out of the 40 children had otherwise healthy dentition. Conclusion The IDADEE children’s home and New Vision Children’s home have hopes to expand their capacity with new construction scheduled to be finished in 2016. As more children enter these homes action is needed to educate caregivers on ways to identify high-risk children to prevent ECC and ways they can be treated before irreversible damage is done to the developing permanent

  9. Orphan drugs in development for urea cycle disorders: current perspectives

    Directory of Open Access Journals (Sweden)

    Häberle J

    2014-09-01

    therapy, are reviewed. Keywords: urea cycle disorders, inherited hyperammonemias, orphan drugs, phenylbutyrate, N-carbamyl-l-glutamate

  10. Applying a Family-Level Economic Strengthening Intervention to Improve Education and Health-Related Outcomes of School-Going AIDS-Orphaned Children: Lessons from a Randomized Experiment in Southern Uganda.

    Science.gov (United States)

    Ssewamala, Fred M; Karimli, Leyla; Torsten, Neilands; Wang, Julia Shu-Huah; Han, Chang-Keun; Ilic, Vilma; Nabunya, Proscovia

    2016-01-01

    Children comprise the largest proportion of the population in sub-Saharan Africa. Of these, millions are orphaned. Orphanhood increases the likelihood of growing up in poverty, dropping out of school, and becoming infected with HIV. Therefore, programs aimed at securing a healthy developmental trajectory for these orphaned children are desperately needed. We conducted a two-arm cluster-randomized controlled trial to evaluate the effectiveness of a family-level economic strengthening intervention with regard to school attendance, school grades, and self-esteem in AIDS-orphaned adolescents aged 12-16 years from 10 public rural primary schools in southern Uganda. Children were randomly assigned to receive usual care (counseling, school uniforms, school lunch, notebooks, and textbooks), "bolstered" with mentorship from a near-peer (control condition, n = 167), or to receive bolstered usual care plus a family-level economic strengthening intervention in the form of a matched Child Savings Account (Suubi-Maka treatment arm, n = 179). The two groups did not differ at baseline, but 24 months later, children in the Suubi-Maka treatment arm reported significantly better educational outcomes, lower levels of hopelessness, and higher levels of self-concept compared to participants in the control condition. Our study contributes to the ongoing debate on how to address the developmental impacts of the increasing numbers of orphaned and vulnerable children and adolescents in sub-Saharan Africa, especially those affected by HIV/AIDS. Our findings indicate that innovative family-level economic strengthening programs, over and above bolstered usual care that includes psychosocial interventions for young people, may have positive developmental impacts related to education, health, and psychosocial functioning.

  11. A psychologist-led educational intervention results in a sustained reduction in neonatal intensive care unit infections

    OpenAIRE

    Hans eVan Rostenberghe; Jacki eShort; Noraida eRamli; Geok Beng Tan; Sivasangari eSubramaniam; Che Anuar eChe Yaakob; Azizah eOthman; Nor Rosidah eIbrahim; Jacqueline eHo; Zeehaida eMohamed; Habsah eHassan

    2014-01-01

    Even though in the corporate world psychological science has been widely used, the formal use of evidence-based psychology in important areas of clinical medicine has been scanty at best. It was the aim of this study to determine the efficacy of a psychologist-led 2-week nurse educator training on the infection rate in the neonatal intensive care unit (NICU). Materials and methods: In 2007, six senior neonatal nurses underwent a training course focusing on the retrieval of evidence and kno...

  12. Human Security Workers Deployed in Austere Environments: A Brief Guide to Self-Care, Sustainment, and Productivity

    Directory of Open Access Journals (Sweden)

    Thomas F. Ditzler

    2015-01-01

    Full Text Available Since the early 1990s, the human security movement has sought to expand the concept of security beyond the traditional military defense of national borders to focus on the intra-state security needs of populations at the individual level. Specific initiatives frequently address problems of population health, ethnic conflict, religious extremism, human rights, environmental or natural disasters, and other critical issues. For expatriate human security workers in the field, the environment may present meaningful challenges to their wellbeing and productivity. This can be especially so for those who have relatively more experience in academic, business, or administrative settings, and less in the field. The authors' goal is to illuminate practices that have demonstrated their efficacy in enhancing wellness, sustainment, and productivity for human security and other humanitarian and development workers deployed to austere environments. The content represents a synoptic consensus of best general practices and guidance from a range of resources comprising United Nations agencies and activities, national and international non-governmental organizations (NGO's, private volunteer organ­izations (PVO's, national military services, and international business concerns.

  13. A psychologist-led educational intervention results in a sustained reduction in neonatal intensive care unit infections

    Directory of Open Access Journals (Sweden)

    Hans eVan Rostenberghe

    2014-11-01

    Full Text Available Even though in the corporate world psychological science has been widely used, the formal use of evidence- based psychology in important areas of clinical medicine has been scanty at best. It was the aim of this study to determine the efficacy of a psychologist-led two-week nurse educator training on the infection rate in the NICU. Materials and methods: Six senior neonatal nurses underwent in 2007 a training course covering the retrieval of evidence and knowledge of psychological principles that would allow them to share the evidence in such a way that evidence is effectively brought into practice. The course was led by a psychologist. The nurses created and delivered their own teaching modules, all focused on infection control. The rates of bacteraemia, 2 years prior to intervention were analyzed and compared with the rate following the intervention for three years.Results: The immediate output of the course included three teaching modules (hand washing, sterile procedures, general measures to control infection. These modules were subsequently administered to the NICU nurses in structured and regular continuous nursing education (CNE sessions. The psychological techniques taught in the course were applied. Bacteraemia in the NICU significantly decreased in the year of the course and the subsequent years when compared to previous years.Conclusion: This study suggests that a psychologist-led course, followed by a structured CNE can lead to a sustainable reduction in infection rates in a NICU.

  14. Treating Unresolved Grief and Posttraumatic Stress Symptoms in Orphaned Children in Tanzania: Group-based Trauma-focused Cognitive Behavioral Therapy

    Science.gov (United States)

    O’Donnell, Karen; Dorsey, Shannon; Gong, Wenfeng; Ostermann, Jan; Whetten, Rachel; Cohen, Judith A.; Itemba, Dafrosa; Manongi, Rachel; Whetten, Kathryn

    2015-01-01

    The study was designed to test the feasibility and child clinical outcomes for a group-based application of Trauma-focused Cognitive Behavior Therapy (TF-CBT) for orphaned children with unresolved grief in Moshi, Tanzania. Sixty-four orphaned children with at least mild symptoms of unresolved grief and/or traumatic stress and their guardians participated in the open trial. The evidence-based TF-CBT protocol was adapted for group delivery, resulting in 12 weekly sessions for child and guardians separately with conjoint activities and three individual visits. Using a task-sharing approach, the intervention was delivered by lay counselors with no prior mental health experience. Primary outcomes assessed were symptoms of unresolved grief and posttraumatic stress (PTS); secondary outcomes included symptoms of depression and overall behavioral adjustment. All assessments were conducted pre-treatment, post-treatment, and 3- and 12-months after the end of treatment. Results showed improved scores on all outcomes post-treatment, sustained at 3 and 12 months. Effect sizes (Cohen’s d) for baseline to post-treatment were 1.36 for child reported grief symptoms; 1.87 for child-reported PTS, and 1.15 for caregiver report of child PTS. PMID:25418514

  15. Anxiety-related behavior of orphan chimpanzees (Pan troglodytes schweinfurthii) at Gombe National Park, Tanzania.

    Science.gov (United States)

    Botero, Maria; Macdonald, Suzanne E; Miller, Rowland S

    2013-01-01

    This study examined the anxiety levels and social interactions of two orphan and four mother-reared adolescent chimpanzees (Pan troglodytes schweinfurthii) in the Kasekela community at Gombe National Park, Tanzania. We used focal sampling in the field at Gombe to observe these adolescent individuals. Their social interactions and anxious behavior, measured as rough scratching, were recorded. The two orphans differed from others of a similar age by exhibiting higher levels of anxiety and lower levels of play. These results suggest that a mother's absence, even in naturalistic conditions in which other members of the community are available to the orphan, may have long-lasting impact on an adolescent's anxiety and its ability to engage in complex social interactions, such as play.

  16. Establishing rarity in the context of orphan medicinal product designation in the European Union.

    Science.gov (United States)

    Tsigkos, Stelios; Hofer, Matthias Philipp; Sheean, Maria Elzbieta; Mariz, Segundo; Larsson, Kristina; Naumann-Winter, Frauke; Fregonese, Laura; Sepodes, Bruno

    2017-06-21

    In the European Union (EU) legislative framework for orphan medicinal product designation, establishing that a condition affects not more than five in 1