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

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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.

Reconsidering the orphan problem: the emergence of male caregivers in Lesotho.

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Block, Ellen

2016-01-01

Care for AIDS orphans in southern Africa is frequently characterized as a "crisis", where kin-based networks of care are thought to be on the edge of collapse. Yet these care networks, though strained by AIDS, are still the primary mechanisms for orphan care, in large part because of the essential role grandmothers play in responding to the needs of orphans. Ongoing demographic shifts as a result of HIV/AIDS and an increasingly feminized labor market continue to disrupt and alter networks of care for orphans and vulnerable children. This paper examines the emergence of a small but growing number of male caregivers who are responding to the needs of the extended family. While these men are still few in number, the strength of gendered ideologies of female care means that this group of men is socially, if not statistically significant. Men continue to be considered caregivers of last resort, but their care will close a small but growing gap that threatens to undermine kin-based networks of care in Lesotho and across the region. The adaptation of gender roles reinforces the strength and resilience of kinship networks even when working against deeply entrenched ideas about gendered division of domestic labor.

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

Persisting mental health problems among AIDS-orphaned children in South Africa.

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Cluver, Lucie D; Orkin, Mark; Gardner, Frances; Boyes, Mark E

2012-04-01

  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.   A 4-year longitudinal follow-up of AIDS-orphaned children with control groups of other-orphans and non-orphans. 1021 children (M = 13.4 years, 50% female, 98% isiXhosa-speaking) were interviewed in 2005 and followed up in 2009 with 71% retention (49% female, M = 16.9 years), in poor urban South African settlements. Children were interviewed using sociodemographic questionnaires and well-validated standardised scales for assessing depression, anxiety, and post-traumatic stress. Data were analysed using mixed-design ANOVA and backward-stepping regression.   AIDS-orphaned children showed higher depression, anxiety, and post-traumatic stress disorder (PTSD) scores in both 2005 and 2009 when compared with other-orphans and non-orphans. Backward-stepping regression, controlling for baseline mental health, and sociodemographic cofactors such as age, gender, and type of bereavement, revealed that being AIDS-orphaned in 2005 was associated with depression, anxiety, and PTSD scores in 2009. This was not the case for other-orphaned or non-orphaned children. Age interacted with orphan status, such that there was a steep rise in psychological distress in the AIDS-orphaned group, but no rise with age amongst other-orphans and non-orphans.   Negative mental health outcomes amongst AIDS-orphaned children are maintained and worsen over a 4-year period. It is important that psychosocial support programmes are sustained, and focus on youth as well as young children. © 2011 The Authors. Journal of Child Psychology and Psychiatry © 2011 Association for Child and Adolescent Mental Health.

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

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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

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

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Simoens, Steven

2011-06-17

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, cost-effectiveness and

Needs and challenges of lay community health workers in a palliative care environment for orphans and vulnerable children

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Bonita Bernice Visagie

2017-12-01

Full Text Available Introduction: The escalation of HIV/AIDS infections in the last decade has increased the need for palliative care community organizations to care for orphans and vulnerable children, who are in dire need of support. Many of these organizations depend on the services of lay community health workers to provide constant care to those in need of it in their local communities. The focus of this study is to explore the role of lay health workers in a community organization located in rural Bronkhorstspruit, Gauteng Province of South Africa. That provides palliative care for orphans and vulnerable children diagnosed with HIV/AIDS. Their roles were analysed critically through a job-demands and job-resources theoretical framework. Methods: A descriptive phenomenological case study design was employed to collect data through twenty five individual interviews, two separate focus groups consisting of ten participants in one group and eleven participants in the other group, observations and document analysis. Data were processed through a rigorous thematic analysis. Results: The findings pointed out specific knowledge and skills these lay community health workers needed in order to be satisfied with, and successful in, their administration of palliative care to orphans and vulnerable children. Participants identified the following organizational challenges that were deemed to be impacting negatively on their work experiences: the lack of career pathing processes; sufficient career guidance; and inadequate employment processes, such as staff retention, succession planning, and promotion. Conclusion: Through the findings, a framework for enhancing the work experiences of the lay community health workers was developed. The uniqueness of this framework is that the focus is on improving the work lives of the lay community health workers, who have serious skills-resourcing needs. There were specific concrete strategies that the organization could adopt to support

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

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

2009-01-01

Background 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. Methodology 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. Principal Findings 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. Conclusion This study does not support the hypothesis that institutional care is systematically associated with

Gender Differences in Maladaptive Cognitive Schema in Orphans in Dakahlia, Egypt

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Abdel-Hady El-Gilany

2013-01-01

Full Text Available The objective of this study was to assess the gender differences of maladaptive cognitive schema among orphans in Dakahlia governorate orphanages. A cross-sectional comparative study included 152 orphan boys and 48 orphan girls in all orphanages homes in Dakahlia governorate, Egypt. Data collection tools included a structured interview questionnaire for personal data; early maladaptive schema questionnaire-short form (EMSQ-SF. The mean score of the total YSQ and all the subscales, except self-sacrifice and unrelenting standards, are significantly higher among females than males. Attention should be given to the psychological care of the orphans especially security, trust, confidence, and autonomy with more attention to orphan girls.

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

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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.

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

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

2014-09-26

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

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

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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

Access to orphan drugs in Europe: current and future issues.

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Michel, Morgane; Toumi, Mondher

2012-02-01

Orphan drugs target small populations of patients. In order to make the field more attractive to pharmaceutical companies and encourage R&D in rare diseases, incentives were put forward by the EU, which are discussed in this article. Because they often are the only available option to treat a disease, some orphan drugs are considered to have high value and as such benefit from high prices on national markets. This has made orphan drugs an attractive market for pharmaceutical companies, with approximately 40 approved orphan drugs generating over $200 million each in yearly sales. The resulting burden this puts on national health insurances may lead to a change in regulation and will certainly lead to new national pricing and reimbursement strategies. They will need to be coherent, fair, effective and sustainable so as to be predictable for companies. Reflection on the subject needs to be initiated.

Legal assessment of current situation on orphan patients in Lithuania.

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Spokiene, Indre

2008-01-01

After Lithuania joined the European Union, the Regulation (EC) No. 141/2000 on orphan medicinal products and Commission Regulation (EC) No. 847/2000 came into force as part of national legislation. Member States must adopt specific measures to increase knowledge on rare diseases and to improve their detection, diagnosis, and treatment. The aim of this article was to present and to assess the current legal situation on orphan patients and their treatment in Lithuania, to identify legislation gaps, and to propose some ideas how to facilitate the solution of the existing problems in this field. For this purpose, European Union and Lithuanian legal documents on rare medicinal products are examined using a comparative method. With reference to inventory of Member States' incentives for rare diseases in national level, the most important issues, which orphan patients face to in Lithuania, are singled out. In Lithuania, the situation of orphan patients in terms of protection of patient rights is insufficiently determined. The access to effective health care services or approved therapies in some cases is restricted. Working relationships between genetic services and various clinical specialists as well as with those in primary care are not legally determined; the number of clinical trials aimed at orphan medicinal products is low. These results suggest a need for awareness raising among Lithuanian Government, health care specialists, patient organizations about the importance to improve practical implementation of European Union legislation and progressive experience of some European countries in this field.

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

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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.

Orphans and political instability.

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Breuning, Marijke; Ishiyama, John

2011-01-01

This study investigates the security implications of growing orphan populations, particularly in Sub-Saharan Africa. Little has been written about the security implications of this especially vulnerable group of children. Are growing orphan populations associated with increases in political instability as has been suggested? Using data from several sources, we employ regression analysis to test whether Sub-Saharan African countries with larger proportions of orphans and those with increasing orphan populations experience higher rates of political instability. We find that the increase in the orphan population is related to an increasing incidence of civil conflict, but do not find a similar relationship for the proportion of orphans. In addition, we find that the causes of orphanhood matter. We conclude that increases in orphan populations (rather than simple proportions) are destabilizing. We suggest possible avenues for mediating the security risks posed by growing orphan populations.

Orphan sources in Slovenia

International Nuclear Information System (INIS)

Janzekovic, H.; Cesarek, J.

2005-01-01

For decades the international standards and requirements postulate severe control over all lifecycle phases of radioactive sources in order to prevent risks associated with exposure of people and the environment. Despite this fact the orphan sources became a serious problem as a consequence of enlargement of economic transactions in many countries in Europe as well as in the world. The countries as well as international organisations, aware of this emerging problem, are trying to gain control over orphan sources using different approaches. These approaches include control over sources before they could become orphan sources. In addition, countries are also developing action plans in case that an orphan source could be found. The problems related to orphan sources in Slovenia is discussed based on the case studies from the last years. While in the nineties of the last century just a few cases of orphan sources were identified their number has increased substantially since 2003. The paper discusses the general reasons for the phenomena of orphan sources as well as the experience related to regaining control over orphan sources. (author)

Caregiver issues and AIDS orphans: perspectives from a social worker focus group.

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Paige, C Y; Johnson, M S

1997-10-01

This study examines social workers' perceptions of the needs of families coping with acquired immunodeficiency syndrome (AIDS). This research investigates the problems of family caregivers of children orphaned by human immunodeficiency virus (HIV)-related death of their parents. A qualitative semistructured interview format was used in a focus group of 18 social workers. Four questions were designed to assess family needs and resources, as well as to evaluate the social workers' perspectives of governmental policies affecting these families. A list of four problems and two recommendations for change evolved from the focus group. Inadequate finances to house and care for the children was the primary cause for distress in these families. The major governmental policy that hindered the social workers' ability to assist families pertained to the low financial entitlement for caregivers who are related to the orphaned child. It was noted that unrelated caregivers receive substantially more money for the care of these children than family caregivers receive. Recommendations were made to change this policy and to develop guardianship laws that facilitate families' abilities to provide care to AIDS orphans. Family caregivers of AIDS orphans are bombarded with great demands and limited resources. This analysis of their situation from the social workers' perspective is a positive step toward the improvement of support services for these families. Further research should include individual qualitative interviews assessing the needs of the caregivers and AIDS orphans.

Family and Nation: Cherokee Orphan Care, 1835-1903

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Reed, Julie L.

2010-01-01

On November 17, 1903, fifteen miles from the nearest railway station and fifty miles northwest of the capital of the Cherokee Nation in Tahlequah, a fire engulfed the Cherokee Orphan Asylum. After the fire the Cherokee Nation relocated the homeless children to the nation's Insane Asylum in Tahlequah, where Sequoyah School stands today. The…

ORPHANED PROTOSTARS

International Nuclear Information System (INIS)

Reipurth, Bo; Connelley, Michael; Mikkola, Seppo; Valtonen, Mauri

2010-01-01

We explore the origin of a population of distant companions (∼1000-5000 AU) to Class I protostellar sources recently found by Connelley and coworkers, who noted that the companion fraction diminished as the sources evolved. Here, we present N-body simulations of unstable triple systems embedded in dense cloud cores. Many companions are ejected into unbound orbits and quickly escape, but others are ejected with insufficient momentum to climb out of the potential well of the cloud core and associated binary. These loosely bound companions reach distances of many thousands of AU before falling back and eventually being ejected into escapes as the cloud cores gradually disappear. We use the term orphans to denote protostellar objects that are dynamically ejected from their placental cloud cores, either escaping or for a time being tenuously bound at large separations. Half of all triple systems are found to disintegrate during the protostellar stage, so if multiple systems are a frequent outcome of the collapse of a cloud core, then orphans should be common. Bound orphans are associated with embedded close protostellar binaries, but escaping orphans can travel as far as ∼0.2 pc during the protostellar phase. The steep climb out of a potential well ensures that orphans are not kinematically distinct from young stars born with a less violent pre-history. The identification of orphans outside their heavily extincted cloud cores will allow the detailed study of protostars high up on their Hayashi tracks at near-infrared and in some cases even at optical wavelengths.

Towards Sustainable Health Care Organizations

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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.

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.

[Orphan drugs].

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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.

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

Education and nutritional status of orphans and children of HIV-infected parents in Kenya.

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

2007-10-01

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 logistic regression. Results indicate that orphans, fostered children, and children of HIV-infected parents are significantly less likely to attend school than non-orphaned/non-fostered children of HIV-negative parents. Children of HIV-infected parents are more likely to be underweight and wasted, and less likely to receive medical care for ARI and diarrhea. Children of HIV-negative single mothers are also disadvantaged on most indicators. The findings highlight the need to expand child welfare programs to include not only orphans but also fostered children, children of single mothers, and children of HIV-infected parents, who tend to be equally, if not more, disadvantaged.

Assessing the feasibility of a web-based registry for multiple orphan lung diseases: the Australasian Registry Network for Orphan Lung Disease (ARNOLD) experience.

Science.gov (United States)

Casamento, K; Laverty, A; Wilsher, M; Twiss, J; Gabbay, E; Glaspole, I; Jaffe, A

2016-04-18

We investigated the feasibility of using an online registry to provide prevalence data for multiple orphan lung diseases in Australia and New Zealand. A web-based registry, The Australasian Registry Network of Orphan Lung Diseases (ARNOLD) was developed based on the existing British Paediatric Orphan Lung Disease Registry. All adult and paediatric respiratory physicians who were members of the Thoracic Society of Australia and New Zealand in Australia and New Zealand were sent regular emails between July 2009 and June 2014 requesting information on patients they had seen with any of 30 rare lung diseases. Prevalence rates were calculated using population statistics. Emails were sent to 649 Australian respiratory physicians and 65 in New Zealand. 231 (32.4%) physicians responded to emails a total of 1554 times (average 7.6 responses per physician). Prevalence rates of 30 rare lung diseases are reported. A multi-disease rare lung disease registry was implemented in the Australian and New Zealand health care settings that provided prevalence data on orphan lung diseases in this region but was limited by under reporting.

Family Care Map: Sustaining family-centered care in Polytrauma Rehabilitation Centers

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Ford, James H.; Wise, Meg; Krahn, Dean; Oliver, Karen Anderson; Hall, Carmen; Sayer, Nina

2015-01-01

The study assessed sustainability of the Family Care Map, a family-centered approach to providing care for Veterans with polytrauma-related injuries, in four Department of Veterans Affairs Polytrauma Rehabilitation Centers. We applied a mixed-methods approach. Staff surveys used standardized measures of sustainability, commitment to change, information, and participation during implementation. Qualitative inquiry assessed Family Care Map implementation and facilitators and barriers to sustainability. Staff sustainability perceptions had a significant positive correlation with affective commitment to change, participation, and information received about the change process. Family Care Map integration into standard practices and use of its concepts with patients and families related to staff perceptions about sustainability. The degree of use and integration of the Family Care Map in traumatic brain injury/polytrauma care varied among the Polytrauma Rehabilitation Centers. Some successful sustainability strategies included integration into daily workflow and organizational culture. Examples of sustainability barriers included staff awareness and use and outdated information. Some practices, such as measuring and documenting the use of the Family Care Map in treatment plans, may not routinely occur. The focus on family-centered care will require further evaluation of organization-, staff-, and innovation-level attributes that influence sustainability of changes designed to improve family-centered care. PMID:25671632

Orphan drugs: the regulatory environment.

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Franco, Pedro

2013-02-01

The definition of a rare disease is not universal and depends on the legislation and policies adopted by each region or country. The main objective of this article is to describe and discuss the legal framework and the regulatory environment of orphan drugs worldwide. Some reflections and discussions on the need for specific orphan drug legislation or policies are described at length. Furthermore, some aspects of the history of each region in respect of the orphan drug legislation evolution are outlined. This article describes and compares the orphan drug legislation or policies of the following countries or regions: United Sates of America (US), European Union (EU), Japan, Australia, Singapore, Taiwan and Canada. The incentives described in the orphan drug legislations or policies, the criteria for designation of orphan status and the authorisation process of an orphan drug are also described and compared. The legislations and policies are to some extent similar but not the same. It is important to understand the main differences among all available legislative systems to improve the international collaboration in the field of orphan drugs and rare diseases. Copyright © 2012 Elsevier Ltd. All rights reserved.

Principles for consistent value assessment and sustainable funding of orphan drugs in Europe.

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Gutierrez, Laura; Patris, Julien; Hutchings, Adam; Cowell, Warren

2015-05-03

The European Orphan Medicinal Products (OMP) Regulation has successfully encouraged research to develop treatments for rare diseases resulting in the authorisation of new OMPs in Europe. While decisions on OMP designation and marketing authorisation are made at the European Union level, reimbursement decisions are made at the national level. OMP value and affordability are high priority issues for policymakers and decisions regarding their pricing and funding are highly complex. There is currently no European consensus on how OMP value should be assessed and inequalities of access to OMPs have previously been observed. Against this background, policy makers in many countries are considering reforms to improve access to OMPs. This paper proposes ten principles to be considered when undertaking such reforms, from the perspective of an OMP manufacturer. We recommend the continued prioritisation of rare diseases by policymakers, an increased alignment between payer and regulatory frameworks, pricing centred on OMP value, and mechanisms to ensure long-term financial sustainability allowing a continuous and virtuous development of OMPs. Our recommendations support the development of more consistent frameworks and encourage collaboration between all stakeholders, including research-based industry, payers, clinicians, and patients.

The impact of the Orphan Drug Act on drug discovery.

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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.

Regional cooperation to reduce the safety and security risks of Orphan radioactive sources

International Nuclear Information System (INIS)

Howard, Geoffrey; Hacker, Celia; Murray, Allan; Romallosa, Kristine; Caseria, Estrella; Africa del Castillo, Lorena

2008-01-01

ANSTO's Regional Security of Radioactive Sources (RSRS) Project, in cooperation with the Philippine Nuclear Research Institute (PNRI), has initiated a program to reduce the safety and security risks of orphan radioactive sources in the Philippines. Collaborative work commenced in February 2006 during the Regional Orphan Source Search and Methods Workshop, co-hosted by ANSTO and the US National Nuclear Security Administration. Further professional development activities have occurred following requests by PNRI to ANSTO to support improvements in PNRI's capability and training programs to use a range of radiation survey equipment and on the planning and methods for conducting orphan source searches. The activities, methods and outcomes of the PNRI-ANSTO cooperative program are described, including: i.) Delivering a training workshop which incorporates use of source search and nuclide identification equipment and search methodology; and train-the-trainer techniques for effective development and delivery of custom designed training in the Philippines; ii.) Support and peer review of course work on Orphan Source Search Equipment and Methodology developed by PNRI Fellows; iii.) Supporting the delivery of the inaugural National Training Workshop on Orphan Source Search hosted by PNRI in the Philippines; iv.) Partnering in searching for orphan sources in Luzon, Philippines, in May 2007. The methods employed during these international cooperation activities are establishing a new model of regional engagement that emphasises sustainability of outcomes for safety and security of radioactive sources. (author)

THE CONTRIBUTION OF SOCIAL ENTREPRENEURSHIP IN MEETING THE NEEDS OF ORPHANS IN THE MBERENGWA DISTRICT, ZIMBABWE

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Katungu, Wisdom

2016-08-01

Full Text Available Since the turn of the millennium Zimbabwe has witnessed a raft of socio-economic and political challenges, exacerbated by the devastating effects of the HIV and Aids pandemic. This diminished the government’s ability to provide safety nets to vulnerable groups. The responsibility for orphan care has been shifted to the community, which has become the core focus of intervention initiatives by devising local-level coping mechanisms to deal with the orphan care crisis. The study explored the contribution of social entrepreneurship in meeting the needs of orphans in the Mberengwa district. The study concludes that the income-generating projects based on social entrepreneurship principles in Mberengwa play an important role in poverty alleviation and social protection, and particularly in meeting the needs of orphans. However, this cannot be achieved without the supportive role of government in promoting private-public partnerships.

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

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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.

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

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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.

"When the obvious brother is not there": political and cultural contexts of the orphan challenge in northern Uganda.

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Oleke, Christopher; Blystad, Astrid; Rekdal, Ole Bjørn

2005-12-01

It is estimated that two million of Uganda's children today are orphaned primarily due to AIDS. While recognising the immense impact of HIV/AIDS on the present orphan problem, this article calls for a broader historic and cultural contextualisation to reach an understanding of the vastness of the orphan challenge. The study on which the article is based was carried out among the Langi in Lira District, northern Uganda, with a prime focus on the situation of orphans within the extended family system. The data were collected through ethnographic fieldwork (8 months); in-depth interviews with community leaders (21), heads of households (45) and orphans (35); through focus group discussions (5) with adult men and women caring for orphans, community leaders and with orphans; and also through documentary review. A survey was conducted in 402 households. The findings reveal a transition over the past 30 years from a situation dominated by 'purposeful' voluntary exchange of non-orphaned children to one dominated by 'crisis fostering' of orphans. Sixty-three percent of the households caring for orphans were found to be no longer headed by resourceful paternal kin in a manner deemed culturally appropriate by the patrilineal Langi society, but rather by marginalised widows, grandmothers or other single women receiving little support from the paternal clan. This transition is partly linked to an abrupt discontinuation of the Langi 'widow inheritance' (laku) practice. It is argued that the consequential transformations in fostering practices in northern Uganda must be historically situated through a focus on the effects of armed conflicts and uprooting of the local pastoral and cotton-based economy, which have occurred since the late 1970s. These processes jointly produced dramatic economic marginalisation with highly disturbing consequences for orphans and their caretakers.

Outcome of anti-retroviral treatment in HIV-infected orphans and non-orphans at an ART centre in North India.

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Bhattacharya, Malobika; Saxena, Romit

2012-01-01

Few Indian studies have reported the long-term efficacy of anti-retroviral treatment (ART) in children and in orphaned, HIV-infected children in particular. To study differences in outcome of ART in HIV-infected orphans compared with non-orphans. A retrospective study of 87 HIV-infected children who commenced ART in the period January 2006 to August 2007. The main measures were orphan status, absolute CD4 count and weight-for-height (WHZ) and height-for-age (HAZ) Z-scores. Median follow-up was 33 months. Forty (45·9%) children were orphaned. Orphans and non-orphans had similar baseline median WHZ and HAZ (-2·48 vs -2·63, P = 0·65 and -2·78 vs -2·91, P = 0·77, respectively). The two groups were similar in terms of WHO clinical stage and frequency of severe immunosuppression at presentation (P = 0·88 and 0·25, respectively). After ART initiation, the median absolute CD4 count increased progressively in both groups. Median WHZ and HAZ increased throughout the study period in the orphans and reached -1 at 27 and 39 months of ART, respectively. In the non-orphans, WHZ remained below that of the orphan group, the difference becoming statistically significant from 18 months of ART. The increment in HAZ in the non-orphan group was at par with the orphan group until 12 months of follow-up, after which it fell between 18 and 30 months. Subsequently, HAZ rose but remained below that of the orphan group. Both WHZ and HAZ failed to reach -1 in the non-orphan group. In both groups, 85% reported 100% adherence to ART. The outcome of ART is not affected by orphan status with the extended family adequately supporting orphaned children. Growth of children whose parents are HIV-infected may be constrained despite ART if there is inadequate family support.

Orphan drug: Development trends and strategies

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Aarti Sharma

2010-01-01

Full Text Available The growth of pharma industries has slowed in recent years because of various reasons such as patent expiries, generic competition, drying pipelines, and increasingly stringent regulatory guidelines. Many blockbuster drugs will loose their exclusivity in next 5 years. Therefore, the current economic situation plus the huge generic competition shifted the focus of pharmaceutical companies from the essential medicines to the new business model - niche busters, also called orphan drugs. Orphan drugs may help pharma companies to reduce the impact of revenue loss caused by patent expiries of blockbuster drugs. The new business model of orphan drugs could offer an integrated healthcare solution that enables pharma companies to develop newer areas of therapeutics, diagnosis, treatment, monitoring, and patient support. Incentives for drug development provided by governments, as well as support from the FDA and EU Commission in special protocols, are a further boost for the companies developing orphan drugs. Although there may still be challenges ahead for the pharmaceutical industry, orphan drugs seem to offer the key to recovery and stability within the market. In our study, we have compared the policies and orphan drug incentives worldwide alongwith the challenges faced by the pharmaceutical companies. Recent developments are seen in orphan drug approval, the various drugs in orphan drug pipeline, and the future prospectives for orphan drugs and diseases.

The psychosocial well-being of orphans in Southern Africa: the perception of orphans and teachers

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M W de Witt

2010-03-01

Full Text Available The escalation in numbers of orphans in Sub-Saharan Africa has become a human catastrophe. If governments do not deal with this phenomenon as a priority it might spiral beyond control. Very few studies have been done to investigate the psychosocial impact of orphanhood on children and communities in developing countries. Very little is known about the life world of orphans in developing countries and even less is known about factors in these children’s lives which can affect their mental health. The researchers decided to undertake research in three areas in Southern Africa to investigate the psychosocial well-being of orphans and to compare the findings with existing research findings. A survey was done in three rural areas to determine the perceptions of orphans regarding their own personal experiences and emotional feelings which may reflect on psychosocial well-being, as well as the perceptions of teachers working with these orphans. Except for depression, the findings with regard to most of the psychosocial aspects were in accordance with the literature. The most important findings were that bereavement practices and approaches fit for developed communities might be of little value in developing settings. We are, however, more than aware that orphans from developed counties or even urban settings might differ from those of developing or deep rural areas. Keywords: Orphans; psychosocial well-being; bereavement; poverty; stigmatisation

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

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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

The plan of physical culture and health work in the organization for orphans and children left without parental care

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Ukolov S.V.

2017-04-01

Full Text Available the article describes the scheme of physical culture and health work in the organization for orphans and children left without parental care, which includes organizational, moral-volitional, documentation, educational components, as well as a security unit. The essence and significance of each of the blocks are revealed. The authors consider physical culture and health work not as a set of competitions, but as one of the directions of work on the socialization of pupils.

Impact of orphan drugs on Latvian budget.

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Logviss, Konstantins; Krievins, Dainis; Purvina, Santa

2016-05-11

Number of orphan medicinal products on the market and number of rare disease patients, taking these usually expensive products, are increasing. As a result, budget impact of orphan drugs is growing. This factor, along with the cost-effectiveness of orphan drugs, is often considered in the reimbursement decisions, directly affecting accessibility of rare disease therapies. The current study aims to assess the budget impact of orphan drugs in Latvia. Our study covered a 5-year period, from 2010 to 2014. Impact of orphan drugs on Latvian budget was estimated from the National Health Service's perspective. It was calculated in absolute values and relative to total pharmaceutical market and total drug reimbursement budget. A literature review was performed for comparison with other European countries. Orphan drug annual expenditure ranged between EUR 2.065 and 3.065 million, with total 5-year expenditure EUR 12.467 million. It constituted, on average, 0.84 % of total pharmaceutical market and 2.14 % of total drug reimbursement budget, respectively. Average annual per patient expenditures varied widely, from EUR 1 534 to EUR 580 952. The most costly treatment was enzyme replacement therapy (Elaprase) for MPS II. Glivec had the highest share (34 %) of the total orphan drug expenditure. Oncological drugs represented more than a half of the total orphan drug expenditure, followed by drugs for metabolic and endocrine conditions and medicines for cardiopulmonary diseases. Three indications: Ph+ CML, MPS II, and PAH accounted for nearly 90 % of the total orphan drug expenditure. Budget impact of orphan drugs in Latvia is very small. It increased slightly over a period of five years, due to the slight increase in the number of patients and the number of orphan drugs reimbursed. Current Latvian drug reimbursement system is not sufficient for most orphan drugs.

Sustainability in care through an ethical practice model.

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

2018-03-01

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.

Some Numbers behind Canada's Decision to Adopt an Orphan Drug Policy: US Orphan Drug Approvals in Canada, 1997-2012.

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Herder, Matthew; Krahn, Timothy Mark

2016-05-01

We examined whether access to US-approved orphan drugs in Canada has changed between 1997 (when Canada chose not to adopt an orphan drug policy) and 2012 (when Canada reversed its policy decision). Specifically, we looked at two dimensions of access to US-approved orphan drugs in Canada: (1) regulatory access; and (2) temporal access. Whereas only 63% of US-approved orphan drugs were granted regulatory approval in 1997, we found that regulatory access to US-approved orphan drugs in Canada increased to 74% between 1997 and 2012. However, temporal access to orphan drugs is slower in Canada: in a head-on comparison of 40 matched drugs, only two were submitted and four were approved first in Canada; moreover, the mean review time in Canada (423 days) was longer than that in the US (mean = 341 days), a statistically significant difference (t[39] = 2.04, p = 0.048). These results raise questions about what motivated Canada's apparent shift in orphan drug policy. Copyright © 2016 Longwoods Publishing.

eRepo-ORP: Exploring the Opportunity Space to Combat Orphan Diseases with Existing Drugs.

Science.gov (United States)

Brylinski, Michal; Naderi, Misagh; Govindaraj, Rajiv Gandhi; Lemoine, Jeffrey

2017-12-10

About 7000 rare, or orphan, diseases affect more than 350 million people worldwide. Although these conditions collectively pose significant health care problems, drug companies seldom develop drugs for orphan diseases due to extremely limited individual markets. Consequently, developing new treatments for often life-threatening orphan diseases is primarily contingent on financial incentives from governments, special research grants, and private philanthropy. Computer-aided drug repositioning is a cheaper and faster alternative to traditional drug discovery offering a promising venue for orphan drug research. Here, we present eRepo-ORP, a comprehensive resource constructed by a large-scale repositioning of existing drugs to orphan diseases with a collection of structural bioinformatics tools, including eThread, eFindSite, and eMatchSite. Specifically, a systematic exploration of 320,856 possible links between known drugs in DrugBank and orphan proteins obtained from Orphanet reveals as many as 18,145 candidates for repurposing. In order to illustrate how potential therapeutics for rare diseases can be identified with eRepo-ORP, we discuss the repositioning of a kinase inhibitor for Ras-associated autoimmune leukoproliferative disease. The eRepo-ORP data set is available through the Open Science Framework at https://osf.io/qdjup/. Copyright © 2017. Published by Elsevier Ltd.

Path of a patient with a rare diagnosis: regulatory documents and organization of the process of treatment and diagnosis of an orphan disease in the Russian Federation

OpenAIRE

S. I. Kutsev

2017-01-01

The main legislative document of the organization of medical care in the Russian Federation “On fundamental healthcare principles in the Russian Federation” and points related to the rare (orphan) diseases are  discussed. The organization of care, rules for managing a federal  registry of orphan diseases and routing of patients with main orphan nosological forms for which treatment is known are presented.

Resource needs to support orphans and vulnerable children in sub-Saharan Africa.

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Stover, John; Bollinger, Lori; Walker, Neff; Monasch, Roland

2007-01-01

In sub-Saharan Africa, 43 million children under the age of 18 have lost one or both parents to AIDS, conflict or other causes. This large number strains systems by which families and communities have traditionally provided care for orphans. Support for some orphans is being provided by a variety of government, community and non-governmental organizations but this assistance reaches only a small percentage of those who need it. This paper estimates the funding required for necessary support to those most in need. We estimate that US$1-4 billion will be required annually by 2010, depending on whether support is provided to all orphans living below the poverty line or just those in most need. This is at least four times current funding and should be a priority topic for donor and national government resource allocation decisions this year.

Path of a patient with a rare diagnosis: regulatory documents and organization of the process of treatment and diagnosis of an orphan disease in the Russian Federation

Directory of Open Access Journals (Sweden)

S. I. Kutsev

2017-01-01

Full Text Available The main legislative document of the organization of medical care in the Russian Federation “On fundamental healthcare principles in the Russian Federation” and points related to the rare (orphan diseases are  discussed. The organization of care, rules for managing a federal  registry of orphan diseases and routing of patients with main orphan nosological forms for which treatment is known are presented.

Orphans and at-risk children in Haiti: vulnerabilities and human rights issues postearthquake.

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Nicholas, Patrice K; George, Erin K; Raymond, Nadia; Lewis-OʼConnor, Annie; Victoria, Stephanie; Lucien, Sergeline; Peters-Lewis, Angelleen; Hickey, Nancy; Corless, Inge B; Tyer-Viola, Lynda; Davis, Sheila M; Barry, Donna; Marcelin, Naomie; Valcourt, Roodeline

2012-01-01

The vulnerability of children in Haiti has increased dramatically since the earthquake in January 2010. Prior to the earthquake, the prevalence of orphans and at-risk children was high but since the earthquake, more than 1 million people-with more than 380,000 children remaining displaced and living in over 1200 displacement sites. These existing conditions leave orphans and at-risk children vulnerable to exploitation, abuse, and increased risk of HIV/AIDS. This article will focus on the complex issues affecting orphans and at-risk children and the intersection with HIV/AIDS and human rights. Specific recommendations by United Nations Children's Fund are discussed. Nursing in Haiti must address the policy-related and population-specific approaches for the care of children living with or affected by HIV/AIDS.

Psychological health of orphan bonobos and chimpanzees in African sanctuaries.

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Victoria Wobber

Full Text Available 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.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.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.

Optimised management of orphan wastes in the UK

International Nuclear Information System (INIS)

Doudou, Slimane; McTeer, Jennifer; Wickham, Stephen; Thied, Rob; Woodcock, Richard; Turner, Tom; Hamblin, Clive; Buckley, Matthew; Walsh, Ciara

2013-01-01

Orphan wastes have properties preventing them from being managed according to existing or currently planned management routes, or lack characterisation so that their management is uncertain. The identification of new management opportunities for orphan wastes could realise significant benefits by reducing the number of processing facilities required, reducing waste volumes, reducing hazard or leading to the development of centres of excellence for the processing of certain types of orphan wastes. Information on the characteristics of orphan waste existing at nuclear licensed sites across the UK has been collated and a database developed to act as a repository for the information gathered. The database provides a capability to analyse the data and to explore possible treatment technologies for each orphan waste type. Thirty five distinct orphan waste types have been defined and possible treatment options considered. Treatment technologies (including chemical, high temperature, immobilisation and physical technologies) that could be applied to one or more of the generic orphan waste streams have been identified. Wiring diagrams have been used to highlight the waste treatment / lifecycle management options that are available for each of the generic orphan groups as well as identifying areas for further research and development. This work has identified the potential for optimising the management of orphan wastes in a number of areas, and many potential opportunities were identified. Such opportunities could be investigated by waste managers at waste producing nuclear sites, to facilitate the development of new management routes for orphan wastes. (authors)

Nutritional status, psychological well-being and the quality of life of AIDS orphans in rural Henan Province, China.

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He, Zhonghu; Ji, Chengye

2007-10-01

To assess the influence of orphanhood due to AIDS on children's nutritional status, psychological well-being and life quality, and to explore appropriate intervention strategies in China. In 2005, 186 children aged 8-15 years (93 AIDS orphans and 93 non-orphans) from a rural area of Henan Province were surveyed in a cross-sectional and matched pairs study on nutritional status, psychological health and life quality. We found no compelling evidence for poorer nutritional status in orphans. The nutritional status of both orphans and non-orphans was extremely poor according to the prevalence of stunting, underweight, wasting and anaemia. Depression, low self-esteem and lower quality of life were more frequent in orphans. These differences mainly existed in boys' groups. No significant differences were found between paternal, maternal and double orphans, or orphans in orphanages or extended families. Regression analysis revealed that orphanhood leads to low self-esteem and more depression which contributes to lower quality of life and mediates the association between orphanhood and quality of life. The high prevalence of poor nutritional status indicates that basic material needs of children, including AIDS orphans, are not met in rural China. Psychological problems were prominent among orphans and had become the most important contributor of lower life quality. Boys were at least as vulnerable as girls. The living conditions of all children in rural China must be improved; school-based care and support are crucial and would be a cost-effective way to improve the overall life quality of AIDS orphans.

Variation in levels of anxiety to dental treatment among nonorphan and orphan children living under different systems.

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Chikkala, Jayanth; Chandrabhatla, Srinivas Kumar; Vanga, Narasimha Rao V

2015-08-01

It is essential to understand the factors influencing the level of anxiety to dental treatment among different children as it can influence seeking dental care. Here, we assessed the impact of parental loss on dental anxiety among 6-13-year-old children. A total of 444 children within the age group 6-13 years were selected. Group 1 consisted of orphan children living in government-run orphanages, Group 2 consisted of orphan children taken care by a person with a motherly relationship, Group 3 consisted of abandoned children living in private organization and Group 4 consisted of children living with their parents. Dental anxiety was measured using children's fear survey schedule-dental subscale and modified faces version of modified child dental anxiety scale. The highest number of anxious children were observed in Group 4 and the difference in the anxiety levels among the four groups was found to be highly statistically significant. Children living in government-run orphanages had least dental anxiety. All the orphans may not have the same anxiety levels and the environment of upbringing the orphans plays a significant role in the development of the anxiety.

1997/98 Orphan Well Fund annual report

International Nuclear Information System (INIS)

1999-04-01

Alberta's Orphan Well Fund (previously referred as the Abandonment Fund) is funded by the oil and gas industry with provincial government support and approval. It was created to enforce and improve regulations regarding orphan wells. 1997/98 marked the year in which Orphan Well Fund activities included pipeline abandonments, facility decommissioning, and well site reclamation. The first part of this report includes the annual report of the Orphan Fund, while the second part includes the report on the Energy and Utilities Board's (EUB's) Liability Management activities which are an important part of enforcing and improving provincial regulations in the prevention of orphan wells. The fund allows liability management to be done with industry's dollars rather than taxpayer's dollars. Highlights for the year include the successful completion on eleven downhole and surface wells. Expanded activities also included the abandonment of eleven pipelines, and facilities decommissioning work at five locations. The report also includes a financial review, and a summary of the future goals of the program. The EUB enforcement activities and operations, as well as the EUB orphan prevention activities are also reviewed. tabs

Orphans in the Dead Sea Scrolls

Directory of Open Access Journals (Sweden)

Gideon R. Kotzé

2016-08-01

Full Text Available This study investigates the literary references to orphans in writings amongst the Qumran texts that were written in Hebrew and can be associated with the sectarian Qumran movement. The study focuses on passages where forms of the word יתום are used. These include the Damascus Document (CD 6:16–17, Hodayot (1QHa 13:22 and Barkhi Nafshia (4Q434 1 i 2. The investigation concludes that the references to orphans in these passages do not have the same rhetorical functions. In CD 6, the wordings of authoritative scriptures are adapted to portray orphans and widows as the victims of wrongdoing. In 1QHa and 4Q434, however, orphans are mentioned in hymns that praise the Lord’s positive treatment of needy people

Value-based reimbursement decisions for orphan drugs: a scoping review and decision framework.

Science.gov (United States)

Paulden, Mike; Stafinski, Tania; Menon, Devidas; McCabe, Christopher

2015-03-01

The rate of development of new orphan drugs continues to grow. As a result, reimbursing orphan drugs on an exceptional basis is increasingly difficult to sustain from a health system perspective. An understanding of the value that societies attach to providing orphan drugs at the expense of other health technologies is now recognised as an important input to policy debates. The aim of this work was to scope the social value arguments that have been advanced relating to the reimbursement of orphan drugs, and to locate these within a coherent decision-making framework to aid reimbursement decisions in the presence of limited healthcare resources. A scoping review of the peer reviewed and grey literature was undertaken, consisting of seven phases: (1) identifying the research question; (2) searching for relevant studies; (3) selecting studies; (4) charting, extracting and tabulating data; (5) analyzing data; (6) consulting relevant experts; and (7) presenting results. The points within decision processes where the identified value arguments would be incorporated were then located. This mapping was used to construct a framework characterising the distinct role of each value in informing decision making. The scoping review identified 19 candidate decision factors, most of which can be characterised as either value-bearing or 'opportunity cost'-determining, and also a number of value propositions and pertinent sources of preference information. We were able to synthesize these into a coherent decision-making framework. Our framework may be used to structure policy discussions and to aid transparency about the values underlying reimbursement decisions for orphan drugs. These values ought to be consistently applied to all technologies and populations affected by the decision.

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.…

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.

Psychosocial and health risk outcomes among orphans and non ...

African Journals Online (AJOL)

The study sample comprised 134 children (61 non-orphans, 73 orphans; mean age = 14.64, SD = 1.85) from the Amajuba district in KwaZulu-Natal. Orphans were no worse off in terms of anxiety/depression (p = 0.65), affability (p = 0.11) and resilience (p = 0.29) in comparison to non-orphans in similar type households.

The Vulnerabilities of Orphaned Children Participating in Research: A Critical Review and Factors for Consideration for Participation in Biomedical and Behavioral Research

Science.gov (United States)

Thompson, Rachel T.; Meslin, Eric M.; Braitstein, Paula K. A.; Nyandiko, Winstone M.; Ayaya, Samuel O.; Vreeman, Rachel C.

2013-01-01

Orphans are a subpopulation with a unique set of additional vulnerabilities. Increasing focus on children’s rights, pediatric global health, and pediatric research makes it imperative to recognize and address unique vulnerabilities of orphaned children. This paper describes the unique vulnerabilities of the orphaned pediatric population and offers a structured set of factors that require consideration when including orphans in biomedical research. Pediatric orphans are particularly vulnerable due to decreased economic resources, psychosocial instability, increased risk of abuse, and delayed/decreased access to healthcare. These vulnerabilities are significant. By carefully considering each issue in a population in a culturally specific and study-specific manner, researchers can make valuable contributions to the overall health and well-being of this uniquely vulnerable population. PMID:23086048

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…

Orphan immunotherapies for allergic diseases.

Science.gov (United States)

Ridolo, Erminia; Montagni, Marcello; Incorvaia, Cristoforo; Senna, Gianenrico; Passalacqua, Giovanni

2016-03-01

As confirmed by systematic reviews and meta-analyses, allergen immunotherapy is clinically effective in the treatment of allergic diseases. In particular, subcutaneous immunotherapy is a pivotal treatment in patients with severe reactions to Hymenoptera venom, whereas subcutaneous immunotherapy and sublingual immunotherapy are indicated in the treatment of allergic rhinitis and asthma by inhalant allergens. Other allergies related to animal dander (other than cat, which is the most studied), such as dog, molds, occupational allergens, and insects, have also been recognized. For these allergens, immunotherapy is poorly studied and often unavailable. Thus, use of the term orphan immunotherapies is appropriate. We used MEDLINE to search the medical literature for English-language articles. Randomized, controlled, masked studies for orphan immunotherapies were selected. In the remaining cases, the available reports were described. The literature on food desensitization is abundant, but for other orphan allergens, such as mosquito, Argas reflexus, dog, or occupational allergens, there are only a few studies, and most are small studies or case reports. Orphan immunotherapy is associated with insufficient evidence of efficacy from controlled trials, an erroneous belief of the limited importance of some allergen sources, and the unlikelihood for producers to have a profit in making commercially available extracts (with an expensive process for registration) to be used in few patients. It should be taken into consideration that adequate preparations should be available also for orphan allergens. Copyright © 2016 American College of Allergy, Asthma & Immunology. Published by Elsevier Inc. All rights reserved.

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

78 FR 35117 - Orphan Drug Regulations

Science.gov (United States)

2013-06-12

..., ``This [framework] affects the plasma protein therapeutics industry significantly because various drugs... orphan designated.'' Because many plasma protein therapies lack orphan-drug designation, they are... change in delivery system from intravenous (IV) to oral may, in some cases and for some drugs, constitute...

Psychological Challenges Affecting Primary School Going Orphans In Wanganui Community Zimbabwe.

Directory of Open Access Journals (Sweden)

Mbwirire John

2017-04-01

Full Text Available This study sought to identify psychological challenges affecting primary school orphans in Wanganui Community in Zimbabwe. The study employed a mixed method approach combining questionnaires with teachers and care givers interview sessions with orphans and in-depth interviews with community socialdevelopment worker. The study finds that lack of love lack of attention and withdrawal were the main signs and symptoms of psychological challenge in the community. The study revealed that the term and symptoms of psychological challenges were understood differently between African context and Western context. The study recommended that action must be taken as soon as possible once the signs and symptoms which include lack of love lack of attention to rectify the psychological challenges faced by the community.

Perceived social support and the psychological well-being of AIDS orphans in urban Kenya.

Science.gov (United States)

Okawa, Sumiyo; Yasuoka, Junko; Ishikawa, Naoko; Poudel, Krishna C; Ragi, Allan; Jimba, Masamine

2011-09-01

Parental deaths due to AIDS seriously affect the psychological well-being of children. Social support may provide an effective resource in the care of vulnerable children in resource-limited settings. However, few studies have examined the relationships between social support and psychological well-being among AIDS orphans. This cross-sectional study was conducted to explore associations between perceived social support (PSS) and the psychological well-being of AIDS orphans, and to identify socio-demographic factors that are associated with PSS. Data were collected from 398 pairs of AIDS orphans (aged 10-18 years) and their caregivers in Nairobi, Kenya. The participants provided information on their socio-demographic characteristics, the children's PSS, and the children's psychological status (based on measures of depressive symptoms and self-esteem). Of the 398 pairs, 327 were included in the analysis. PSS scores of AIDS orphans showed significant correlations with depressive symptoms (ρ =-0.31, psiblings (β=3.044, p=0.016), were also associated with higher PSS scores. In particular, HIV-infected children (n=37) had higher scores of PSS from a special person (β=2.208, p=0.004), and children living with biological siblings (n=269) also had higher scores of PSS from both a special person (β=1.411, p=0.029) and friends (β=1.276, p=0.039). In conclusion, this study showed that PSS is positively associated with the psychological well-being of AIDS orphans. Siblings and special persons can be effective sources of social support for AIDS orphans, which help to promote their psychological well-being.

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

[Shift of focus in the financing of Hungarian drugs. Reimbursement for orphan drugs for treating rare diseases: financing of enzyme replacement therapy in Hungary].

Science.gov (United States)

Szegedi, Márta; Molnár, Mária Judit; Boncz, Imre; Kosztolányi, György

2014-11-02

Focusing on the benefits of patients with rare disease the authors analysed the aspects of orphan medicines financed in the frame of the Hungarian social insurance system in 2012 in order to make the consumption more rational, transparent and predictable. Most of the orphan drugs were financed in the frame of compassionate use by the reimbursement system. Consequently, a great deal of crucial problems occurred in relation to the unconventional subsidized method, especially in the case of the highest cost enzyme replacement therapies. On the base of the findings, proposals of the authors are presented for access to orphan drugs, fitting to the specific professional, economical and ethical aspects of this unique field of the health care system. The primary goal is to provide a suitable subsidized method for the treatment of rare disease patients with unmet medical needs. The financial modification of orphans became indispensible in Hungary. Professionals from numerous fields dealing with rare disease patients' care expressed agreement on the issue. Transforming the orphan medicines' financial structure has been initiated according to internationally shared principles.

Affordable orphan drugs: a role for not-for-profit organizations.

Science.gov (United States)

Davies, Elin H; Fulton, Emma; Brook, Daniel; Hughes, Dyfrig A

2017-07-01

The success of the Regulation on Orphan Medicinal Products in the European Union is evidenced by the 127 orphan drugs that have had market authorization since 2000. However, the incentives aimed at stimulating research and development have had the unintended consequence of increasing drug cost, resulting in many orphan drugs not being cost-effective. Orphan drugs command an increasing share of the pharmaceutical market and account for a disproportionate amount of healthcare expenditure. Orphan drug ownership by socially motivated, not-for-profit organizations may facilitate access to more affordable orphan drugs, for the benefit of patients and healthcare systems alike. This study aims to describe opportunities for such organizations to become orphan drug Market Authorization Holders. We reviewed data on the ownership of EMA designated and approved orphan drugs, identified funding opportunities and business models for not-for-profit organizations, and summarised relevant legal and policy documents concerning intellectual property rights and drug regulation. Using repurposed drugs as a paradigm, this narrative review navigates the regulatory hurdles, describes the legal context and identifies funding opportunities, in a bid to facilitate and encourage not-for-profit organizations to lead on the development of affordable orphan drugs. Although the regulatory steps required to obtain an MA for an orphan drug are numerous and challenging, they are not insurmountable and can be achieved by not-for-profit organizations that are socially motivated to reduce the costs of orphan drugs to the payers of healthcare. Opportunities for orphan drug development resulting in affordable products lie mainly with repurposed drugs. © 2017 The British Pharmacological Society.

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.

Understanding orphan and non-orphan adolescents' sexual risks in the context of poverty: a qualitative study in Nyanza Province, Kenya.

Science.gov (United States)

Juma, Milka; Alaii, Jane; Bartholomew, L Kay; Askew, Ian; Van den Born, Bart

2013-07-25

Some studies show orphanhood to be associated with increased sexual risk-taking while others have not established this relationship, but have found factors other than orphanhood as predictors of sexual risk behaviours and outcomes among adolescents. This study examines community members' perceptions of how poverty influences adolescent sexual behaviour and outcomes in four districts of Nyanza Province, Kenya. Eight study sites within the four districts were randomly selected. Focus group discussions were conducted with a purposive sample of adolescents, parents and caregivers. Key informant interviews were undertaken with a purposive sample of community leaders, child welfare and healthcare workers, and adolescents. The two methods elicited information on factors perceived to predispose adolescent orphans and non-orphans to sexual risks. Data were analysed through line-by-line coding, grouped into families and retrieved as themes and sub-themes. Participants included 147 adolescents and parents/caregivers in 14 focus groups and 13 key informants. Poverty emerged as a key predisposing factor to sexual risk behaviour among orphans and non-orphans. Poverty was associated with lack of food, poor housing, school dropout, and engaging in income generating activities, all of which increase their vulnerability to transactional sex, early marriage, sexual experimentation, and the eventual consequences of increased risk of unintended pregnancies and STI/HIV. Poverty was perceived to contribute to increasing sexual risks among orphan and non-orphan adolescents through survival strategies adopted to be able to meet their basic needs. Policies for prevention and intervention that target adolescents in a generalized poverty and HIV epidemic should integrate economic empowerment for caregivers and life skills for adolescents to reduce vulnerabilities of orphan and non-orphan adolescents to sexual risk behaviour.

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

Radiation Safety and Orphan Sources

International Nuclear Information System (INIS)

Janzekovic, H.; Krizman, M.

2006-01-01

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

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

Orphan Well Association 2007-08 annual report

International Nuclear Information System (INIS)

2008-06-01

The Alberta Oil and Gas Orphan Abandonment and Reclamation Association or Orphan Well Association (OWA) is a not for profit organization which operates as a separate, financially independent organization under the legal authority delegated by the Alberta Energy Resources Conservation Board (ERCB). The OWA was established in January 2002 as a joint initiative between the upstream oil and gas industry and the provincial government. The Alberta government supports the initiative to deal with upstream oil and gas orphan wells through the ERCB and Alberta Environment (AENV). The ERCB collects funds from industry through an annual orphan fund levy and other fees which are then contributed directly to the OWA to cover the expenditures on orphan well abandonment and reclamation activities. The OWA prepares a yearly annual budget which determines the amount of the orphan fund levy. This budget is then approved by its four member organizations, notably the Canadian Association of Petroleum Producers (CAPP), Small Explorers and Producers Association of Canada, ERCB and AENV. This annual report for the OWA for 2007-2008 presented a historical summary of funding; a historical summary of expenditures; and a discussion of operating and financial highlights. These operating highlights included well abandonment; pipeline abandonment; facility decommissioning; and site reclamation. Financial statements for the OWA were also provided. It was concluded that the OWA had a year of responsible and productive operations. 8 tabs., 6 figs

Creating A Sustainable Model of Spine Care in Underserved Communities

DEFF Research Database (Denmark)

Haldeman, Scott; Nordin, Margareta; Outerbridge, Geoff

2015-01-01

The world lacks sustainable models of care to manage spinal disorders in poor and underserved communities. The purpose of this article is to: (1) review the rationale and importance of developing a sustainable evidence-based model of care at low cost for people with spinal disorders in underserved...... 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...... are adapted to and integrated within each community in collaboration with local decision makers, existing health care workers and traditional healers. Cornerstones of WSC's emphasis on long-term sustainability are (1) education of community partners, governments and local health professionals, and (2...

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...... that can only be sustained through continuous flows of donor funding. It argues that the persistence of sustainability as an organising principle is connected both to its self-confirming logic and to the ways in which practices of ‘sustainability’ shape the subjectivities of local brokers and come...

Estimating the budget impact of orphan medicines in Europe: 2010 - 2020

Directory of Open Access Journals (Sweden)

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

The importance of HIV prevention messaging for orphaned youth in Zimbabwe.

Science.gov (United States)

Haney, Erica; Singh, Kavita

2012-01-01

The AIDS epidemic has contributed to a drastic increase in the number of orphans in Zimbabwe. Female adolescent orphans are particularly in jeopardy of contracting HIV due to disadvantages including extreme poverty, low education, and the absent of parental oversight which can lead to higher risk-taking sexual behaviors. By understanding where girls receive education about HIV and who they rely on for information, organizations can effectively modify existing programs to better target this at-risk population. For this study a household survey was conducted which included 216 orphans and 324 non-orphans (n=540), aged 12-17 years, in the resource-poor setting of Hwange District, Zimbabwe. The aims of this article were to examine the differences between orphans and non-orphans in HIV prevention message exposure, level of motivation for learning about HIV, and communication with caregivers about safe sex. The household survey revealed that younger orphans, aged 12-15 years, were more motivated to learn about HIV and had greater HIV messaging exposure in school than non-orphans. These exposure and differences in the levels of motivation between groups dissipated at older ages. Our research also discovered less caregiver communication among orphans than non-orphans. Our findings suggest that HIV programs targeting orphans need to do a better job at keeping older orphans interested in HIV prevention at a time when it matters most. Furthermore, intervention strategies that provide caregiver support are instrumental in effectively delivering prevention messages to girls at home.

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

African Journals Online (AJOL)

Objectives: To compare internalising problems reported by orphans and their caregivers with that of non-orphans and their caregivers. Design: Case control study. Setting: Cahora-Bassa District of Tete, Mozambique Subjects: Seventy-six maternal or double orphans (aged 10-14 years) and their caregivers were compared ...

Advancements in therapeutically-targeting orphan GPCRs

Directory of Open Access Journals (Sweden)

Jennifer eStockert

2015-05-01

Full Text Available G-protein coupled receptors (GPCRs are popular biological targets for drug discovery and development. To date there are more than 140 orphan GPCRs, i.e. receptors whose endogenous ligands are unknown. Traditionally orphan GPCRs have been difficult to study and the development of therapeutic compounds targeting these receptors has been extremely slow although these GPCRs are considered important targets based on their distribution and behavioral phenotype revealed by animals lacking the receptor. Recent advances in several methods used to study orphan receptors, including protein crystallography and homology modeling are likely to be useful in the identification of therapeutics targeting these receptors. In the past 13 years, over a dozen different Class A GPCRs have been crystallized; this trend is exciting, since homology modeling of GPCRs has previously been limited by the availability of solved structures. As the number of solved GPCR structures continues to grow so does the number of templates that can be used to generate increasingly accurate models of phylogenetically-related orphan GPCRs. The availability of solved structures along with the advances in using multiple templates to build models (in combination with molecular dynamics simulations that reveal structural information not provided by crystallographic data and methods for modeling hard-to-predict flexible loop regions have improved the quality of GPCR homology models. This, in turn, has improved the success rates of virtual ligand screens that use homology models to identify potential receptor binding compounds. Experimental testing of the predicted hits and validation using traditional GPCR pharmacological approaches can be used to drive ligand-based efforts to probe orphan receptor biology as well as to define the chemotypes and chemical scaffolds important for binding. As a result of these advances, orphan GPCRs are emerging from relative obscurity as a new class of drug

Orphan diseases: state of the drug discovery art.

Science.gov (United States)

Volmar, Claude-Henry; Wahlestedt, Claes; Brothers, Shaun P

2017-06-01

Since 1983 more than 300 drugs have been developed and approved for orphan diseases. However, considering the development of novel diagnosis tools, the number of rare diseases vastly outpaces therapeutic discovery. Academic centers and nonprofit institutes are now at the forefront of rare disease R&D, partnering with pharmaceutical companies when academic researchers discover novel drugs or targets for specific diseases, thus reducing the failure risk and cost for pharmaceutical companies. Considerable progress has occurred in the art of orphan drug discovery, and a symbiotic relationship now exists between pharmaceutical industry, academia, and philanthropists that provides a useful framework for orphan disease therapeutic discovery. Here, the current state-of-the-art of drug discovery for orphan diseases is reviewed. Current technological approaches and challenges for drug discovery are considered, some of which can present somewhat unique challenges and opportunities in orphan diseases, including the potential for personalized medicine, gene therapy, and phenotypic screening.

Psychological distress amongst AIDS-orphaned children in urban South Africa.

Science.gov (United States)

Cluver, Lucie; Gardner, Frances; Operario, Don

2007-08-01

South Africa is predicted to have 2.3 million children orphaned by Acquired Immune Deficiency Syndrome (AIDS) by 2020 (Actuarial Society of South Africa, 2005). There is little knowledge about impacts of AIDS-related bereavement on children, to aid planning of services. This study aimed to investigate psychological consequences of AIDS orphanhood in urban township areas of Cape Town, South Africa, compared to control groups of children and adolescents orphaned by other causes, and non-orphans. One thousand and twenty-five children and adolescents (aged 10-19) were interviewed using socio-demographic questionnaires and standardised scales for assessing depression, anxiety, post-traumatic stress, peer problems, delinquency and conduct problems. Controlling for socio-demographic factors such as age, gender, formal/informal dwelling and age at orphanhood, children orphaned by AIDS were more likely to report symptoms of depression, peer relationship problems, post-traumatic stress, delinquency and conduct problems than both children orphaned by other causes and non-orphaned children. Anxiety showed no differences. AIDS-orphaned children were more likely to report suicidal ideation. Compared to Western norms, AIDS-orphaned children showed higher levels of internalising problems and delinquency, but lower levels of conduct problems. Children orphaned by AIDS may be a particularly vulnerable group in terms of emotional and, to a lesser extent, behavioural problems. Intervention programs are necessary to ameliorate the psychological sequelae of losing a parent to AIDS.

Orphan drugs: trends and issues in drug development.

Science.gov (United States)

Rana, Proteesh; Chawla, Shalini

2018-04-12

Research in rare diseases has contributed substantially toward the current understanding in the pathophysiology of the common diseases. However, medical needs of patients with rare diseases have always been neglected by the society and pharmaceutical industries based on their small numbers and unprofitability. The Orphan Drug Act (1983) was the first serious attempt to address the unmet medical needs for patients with rare diseases and to provide impetus for the pharmaceutical industry to promote orphan drug development. The process of drug development for rare diseases is no different from common diseases but involves significant cost and infrastructure. Further, certain aspect of drug research may not be feasible for the rare diseases. The drug-approving authority must exercise their scientific judgment and ensure due flexibility while evaluating data at various stages of orphan drug development. The emergence of patent cliff combined with the government incentives led the pharmaceutical industry to realize the good commercial prospects in developing an orphan drug despite the small market size. Indeed, many drugs that were given orphan designation ended up being blockbusters. The orphan drug market is projected to reach $178 billion by 2020, and the prospects of research and development in rare diseases appears to be quite promising and rewarding.

Priority setting for orphan drugs: an international comparison.

Science.gov (United States)

Rosenberg-Yunger, Zahava R S; Daar, Abdallah S; Thorsteinsdóttir, Halla; Martin, Douglas K

2011-04-01

To describe the process of priority setting for two orphan drugs - Cerezyme and Fabrazyme - in Canada, Australia and Israel, in order to understand and improve the process based on stakeholder perspectives. We conducted qualitative case studies of how three independent drug advisory committees made decisions relating to the funding of Cerezyme and Fabrazyme. Interviews were conducted with 22 informants, including committee members, patient groups and industry representatives. (1) DESCRIPTION: Orphan drugs reimbursement recommendations by expert panels were based on clinical evidence, cost and cost-effectiveness analysis. (2) EVALUATION: Committee members expressed an overall preference for the current drug review process used by their own committee, but were concerned with the fairness of the process particularly for orphan drugs. Other informants suggested the inclusion of other relevant values (e.g. lack of alternative treatments) in order to improve the priority setting process. Some patient groups suggested the use of an alternative funding mechanism for orphan drugs. Priority setting for drugs is not solely a technical process (involving cost-effective analysis, evidence-based medicine, etc.). Understanding the process by which reimbursement decisions are made for orphan drugs may help improve the system for future orphan drugs. Copyright © 2010 Elsevier Ireland Ltd. All rights reserved.

The involvement of extended families in the wellness of orphans in a primary school in Masvingo city in Zimbabwe

OpenAIRE

2014-01-01

D.Phil. (Career and Life Orientation) The study focuses on how extended families are involved on the wellness of orphans at a primary school in Masvingo City in Zimbabwe. Through an ethnographic research design, the study aimed to establish the involvement of extended families and challenges they face in rendering support and care to orphans. This study draws an intensive ethnographic research interrogative approach through observations, interviews, researcher made test and document analys...

Orphan drugs expenditure in the Netherlands in the period 2006–2012

OpenAIRE

Kanters, Tim A; Steenhoek, Adri; Hakkaart, 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 Netherlands.Methods. We examined the number of orphan drugs, the number of patients and budget impact of orphan drugs in the Netherlands in the period 2006 to 2012, both for inpatient and outpatient orphan drugs....

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.

Financing drug discovery for orphan diseases.

Science.gov (United States)

Fagnan, David E; Gromatzky, Austin A; Stein, Roger M; Fernandez, Jose-Maria; Lo, Andrew W

2014-05-01

Recently proposed 'megafund' financing methods for funding translational medicine and drug development require billions of dollars in capital per megafund to de-risk the drug discovery process enough to issue long-term bonds. Here, we demonstrate that the same financing methods can be applied to orphan drug development but, because of the unique nature of orphan diseases and therapeutics (lower development costs, faster FDA approval times, lower failure rates and lower correlation of failures among disease targets) the amount of capital needed to de-risk such portfolios is much lower in this field. Numerical simulations suggest that an orphan disease megafund of only US$575 million can yield double-digit expected rates of return with only 10-20 projects in the portfolio. Copyright © 2013 The Authors. Published by Elsevier Ltd.. All rights reserved.

The availability and affordability of orphan drugs for rare diseases in China.

Science.gov (United States)

Gong, Shiwei; Wang, Yingxiao; Pan, Xiaoyun; Zhang, Liang; Huang, Rui; Chen, Xin; Hu, Juanjuan; Xu, Yi; Jin, Si

2016-02-27

Orphan drugs are intended to treat, prevent or diagnose rare diseases. In recent years, China healthcare policy makers and patients have become increasingly concerned about orphan drug issues. However, very few studies have assessed the availability and affordability of orphan drugs for rare diseases in China. The aim of this study was to provide an overview of the availability and affordability of orphan drugs in China and to make suggestions to improve patient access to orphan drugs. Two components of the availability of orphan drugs were examined. Market availability was assessed by the extent to which orphan drugs were marketed in China with a comparison to orphan drugs in international markets, such as the U.S., EU and Japan. We conducted surveys and collected data from 24 tertiary public hospitals in China to measure hospital-level availability of orphan drugs. The affordability of orphan drugs was calculated using hospital dispensary prices and was expressed as days of average daily income required for the cost of a course of treatment. Affordability was also analyzed under the Chinese basic medical insurance system. Orphan drugs approved in the U.S., EU and Japan had 37.8%, 24.6% and 52.4% market availability in China, respectively. Median availability of 31 orphan drugs surveyed at the 24 tertiary public hospitals was 20.8% (very low). Within a periodic treatment course, the average treatment cost of 23 orphan drugs is approximately 4, 843. 5 USD, which equates to 505.6 days of per capita net income for an urban resident with a middle income (187.4 days for a high-income urban resident) or 1,582.8 days's income for a rural resident with a middle income (657.2 days for a high-income rural resident). Except for homoharringtonine, 22 orphan drugs for 14 rare diseases were unaffordable for the most of residents in China. With 5% out-of-pocket expenses, only three generics could be afforded by middle-income residents, whereas seven drugs for high-income urban

Nutritional Issues of HIV/AIDS Orphans in Sagamu South Western ...

African Journals Online (AJOL)

Little is known about the health and nutrition of those HIV/AIDS orphans and inconsistent findings make it difficult to assess if orphans and other vulnerable children have specific nutritional needs. This study investigated nutritional status HIV/AIDS orphans in Sagamu. The study population consisted of fifty seronegative ...

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.

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

African Journals Online (AJOL)

An in-depth study of the orphans' lives, undertaken to complement the census, revealed that these orphans were highly mobile between households, with almost 50% of them moving homes within a six-month period. An analysis of this phenomenon found that orphan mobility was a deliberate household strategy to manage ...

The socio-demographic factors of children orphaned by aids in ...

African Journals Online (AJOL)

Conclusion: The percentage of HIV patients that are orphans in this study is significant. The morbidities in the orphans had deprived them of early childhood education and immunization. Breastfeeding of all the orphans may have compounded the seemingly high mother to child HIV transmission. There is an urgent need for ...

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.

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…

Financing drug discovery for orphan diseases

OpenAIRE

Fagnan, David Erik; Gromatzky, Austin A.; Stein, Roger Mark; Fernandez, Jose-Maria; Lo, Andrew W.

2014-01-01

Recently proposed ‘megafund’ financing methods for funding translational medicine and drug development require billions of dollars in capital per megafund to de-risk the drug discovery process enough to issue long-term bonds. Here, we demonstrate that the same financing methods can be applied to orphan drug development but, because of the unique nature of orphan diseases and therapeutics (lower development costs, faster FDA approval times, lower failure rates and lower correlation of failures...

Comparison of the Psychological Characteristics of Adaptation in Orphan Students of Initial Learning Stage to Adaptation Potential in Students Brought up in Families

Directory of Open Access Journals (Sweden)

Zamorueva V.V.,

2014-08-01

Full Text Available We present a study of psychological characteristics of preadult orphans, their psychological adaptation to the conditions of learning in high school compared to the norm population (students living in family. We assumed that the level of adaptation of the orphan students is significantly smaller than in other students, because of their special life circumstances (maternal deprivation, living in residential care institutions, sometimes bad heredity, lack of life skills in everyday issues, personal problems. The results of the survey of 49 orphan students (26 girls and 23 boys and 49 first-year students brought up by parents (28 girls and 21 boys, confirmed this hypothesis and allow us to tell that orphan students need special psychological help in the learning process in high school to grow at a personal and professional level.

THE ORBIT OF THE ORPHAN STREAM

International Nuclear Information System (INIS)

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

2010-01-01

We use recent Sloan Extension for Galactic Understanding and Exploration (SEGUE) spectroscopy and the Sloan Digital Sky Survey (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 has 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 0 , 49 0 ), 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) 0 = 0.22. The BHB stars have a low metallicity of [Fe/H] WBG = -2.1. The orbit is best fit to a halo potential with a halo plus disk mass of about 2.6 x 10 11 M sun , 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 halo = 73 ± 24 km s -1 , a disk+bulge mass of M(R 11 M sun , and a halo mass of M(R 11 M sun . However, we can find similar fits to the data that use a Navarro-Frenk-White halo profile or that have smaller disk masses and correspondingly larger

Assessing the feasibility of a web-based registry for multiple orphan lung diseases: the Australasian Registry Network for Orphan Lung Disease (ARNOLD) experience

OpenAIRE

Casamento, K.; Laverty, A.; Wilsher, M.; Twiss, J.; Gabbay, E.; Glaspole, I.; Jaffe, A.

2016-01-01

Background We investigated the feasibility of using an online registry to provide prevalence data for multiple orphan lung diseases in Australia and New Zealand. Methods A web-based registry, The Australasian Registry Network of Orphan Lung Diseases (ARNOLD) was developed based on the existing British Paediatric Orphan Lung Disease Registry. All adult and paediatric respiratory physicians who were members of the Thoracic Society of Australia and New Zealand in Australia and New Zealand were s...

Role of traditional healers in psychosocial support in caring for the orphans:a case of Dar es Salaam city,Tanzania

OpenAIRE

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

2005-01-01

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 in...

A roadmap for breeding orphan leafy vegetable species

NARCIS (Netherlands)

Sogbohossou, E.O.D.; Achigan-Dako, Enoch G.; Maundu, Patrick; Solberg, Svein; Deguenon, Edgar M.S.; Mumm, Rita H.; Hale, Iago; Deynze, van Allen; Schranz, M.E.

2018-01-01

Despite an increasing awareness of the potential of "orphan" or unimproved crops to contribute to food security and enhanced livelihoods for farmers, coordinated research agendas to facilitate production and use of orphan crops by local communities are generally lacking. We provide an overview of

Orphan Strontium-87 in Abyssal Peridotites: Daddy Was a Granite

Science.gov (United States)

Snow, Jonathan E.; Hart, Stanley R.; Dick, Henry J. B.

1993-12-01

The 87Sr/86Sr ratios in some bulk abyssal and alpine peridotites are too high to be binary mixtures of depleted mantle and seawater components. The apparent excess, or "orphan," 87Sr appears to be separated from its radioactive parent. Such observations were widely held to be analytical artifacts. Study of several occurrences of orphan 87Sr shows that the orphan component in abyssal peridotite is located in the alteration products of olivine and enstatite in the peridotite. The orphan 87Sr is most likely introduced by infiltration of low-temperature (<200^circC) seawater bearing suspended detrital particulates. These particulates include grains of detrital clay that are partly derived from continental (that is, granitic) sources and thus are highly radiogenic. Orphan 87Sr and other radiogenic isotopes may provide a tracer for low-temperature seawater penetrating into the oceanic crust.

Health Technology Assessment Of Orphan Drugs : The example of Pompe disease

NARCIS (Netherlands)

T.A. Kanters (Tim A.)

2016-01-01

markdownabstractIn recent decades, the development of orphan drugs, i.e. drugs for rare diseases, is stimulated by regulations in various countries. However, the generally high prices of orphan drugs confront policy makers with difficult reimbursement decisions. The orphan disease investigated in

The emergence of an ethic of care in rural Kenyan schools?

DEFF Research Database (Denmark)

Skovdal, Morten; Evans, Ruth

2017-01-01

schools, interviews were conducted with 18 teachers and 57 orphaned and vulnerable pupils, alongside Photovoice. Drawing on thematic analysis and an ‘ethic of care’ theoretical perspective, we unpack the informal caring practices of teachers within resource-constrained settings. The research provides...... glimpses of schools as spaces of care, participation and support for orphaned and vulnerable pupils. Recognising and providing institutional support for the development of an ethic of care in schools may help to tackle the considerable educational barriers facing girls and boys who are orphaned...

Sustainable thermal technologies and care homes: Productive alignment or risky investment?

International Nuclear Information System (INIS)

Neven, Louis; Walker, Gordon; Brown, Sam

2015-01-01

The use of more sustainable thermal technologies is a policy imperative across the UK building stock. However, not all building uses provide the same opportunities for technology uptake as others. Care homes for older people have characteristics which in technical and economic terms suggest that they might be particularly appropriate for the implementation of more sustainable thermal technologies. They have comparatively high demands for space heating and hot water often sustained on a 24/7 basis. However there are many considerations, both generic and contextual, that will typically play into processes of technology uptake. Through qualitative research in six case study homes, focused on management and staff perspectives and experiences, we explore the degree to which there might be a productive alignment between care home operation and the use of sustainable thermal technologies. Two key themes emerge focused on business considerations and the importance of avoiding risk and damage to reputation; and the ways in which different thermal technologies are relevant to and can potentially impact on care practices. We conclude that despite potential benefits the sector could remain rather resistant to sustainability innovations. We suggest therefore areas in which productive action and further research could be undertaken. -- Highlights: •Care homes for older people might be particularly appropriate for the use of sustainable thermal technologies. •We examine if a productive alignment between care homes and the use of sustainable thermal technologies does exist in practice. •Two key themes are risks to business reputation; and relevance and potential benefits to care practices. •We conclude that the sector could remain rather reluctant to embrace sustainability innovation

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…

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, ...

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

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.

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.

Unique characteristics of regulatory approval and pivotal studies of orphan anticancer drugs in Japan.

Science.gov (United States)

Nakayama, Hiroki; Tsukamoto, Katsura

2018-04-17

The approval of orphan anticancer drugs has increased, with the number exceeding that of non-orphan drugs in Japan in recent years. Although orphan anticancer drugs may have unique characteristics due to their rarity, these have not been fully characterized. We investigated anticancer drugs approved in Japan between April 2004 and November 2017 to reveal the characteristics of regulatory approval and pivotal studies on orphan anticancer drugs compared to non-orphan drugs. The median regulatory review time and number of patients in pivotal studies on orphan anticancer drugs (281.0 days [interquartile range, 263.3-336.0]; 222.5 patients [66.0-454.3]) were significantly lower than those on non-orphan drugs (353.0 days [277.0-535.5]; 521.0 patients [303.5-814.5], respectively) (P < 0.001). Phase II, non-randomized and non-controlled designs were more frequently used in pivotal studies on orphan anticancer drugs (45.9%, 41.9% and 43.2%) than non-orphan drugs (17.2%, 14.1% and 14.1%, respectively). Response rate was more commonly used as a primary endpoint in pivotal studies on orphan anticancer drugs (48.6%) than non-orphan drugs (17.2%). Indications limited by molecular features, second or later treatment line, and accelerated approval in the United States were associated with the use of response rate in orphan anticancer drug studies. In conclusion, we demonstrated that orphan anticancer drugs in Japan have unique characteristics compared to non-orphan drugs: shorter regulatory review and pivotal studies frequently using phase II, non-randomized, or non-controlled designs and response rate as a primary endpoint, with fewer patients.

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.

Sustaining complex interventions in long-term care: a qualitative study of direct care staff and managers

OpenAIRE

Col?n-Emeric, Cathleen; Toles, Mark; Cary, Michael P.; Batchelor-Murphy, Melissa; Yap, Tracey; Song, Yuting; Hall, Rasheeda; Anderson, Amber; Burd, Andrew; Anderson, Ruth A.

2016-01-01

Background Little is known about the sustainability of behavioral change interventions in long-term care (LTC). Following a cluster randomized trial of an intervention to improve staff communication (CONNECT), we conducted focus groups of direct care staff and managers to elicit their perceptions of factors that enhance or reduce sustainability in the LTC setting. The overall aim was to generate hypotheses about how to sustain complex interventions in LTC. Methods In eight facilities, we cond...

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

Orphans in the Dead Sea Scrolls | Kotzé | HTS Teologiese Studies ...

African Journals Online (AJOL)

The investigation concludes that the references to orphans in these passages do not have the same rhetorical functions. In CD 6, the wordings of authoritative scriptures are adapted to portray orphans and widows as the victims of wrongdoing. In 1QHa and 4Q434, however, orphans are mentioned in hymns that praise the ...

Orphan caribou, Rangifer tarandus, calves: A re-evaluation of overwinter survival data

Science.gov (United States)

Joly, Kyle

2000-01-01

Low sample size and high variation within populations reduce power of statistical tests. These aspects of statistical power appear to have affected an analysis comparing overwinter survival rates of non-orphan and orphan Caribou (Rangifer tarandus) calves by an earlier study for the Porcupine Caribou Herd. A re-evaluation of the data revealed that conclusions about a lack of significant difference in the overwinter survival rates between orphan and non-orphan calves were premature.

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.

Sustaining complex interventions in long-term care: a qualitative study of direct care staff and managers.

Science.gov (United States)

Colón-Emeric, Cathleen; Toles, Mark; Cary, Michael P; Batchelor-Murphy, Melissa; Yap, Tracey; Song, Yuting; Hall, Rasheeda; Anderson, Amber; Burd, Andrew; Anderson, Ruth A

2016-07-16

Little is known about the sustainability of behavioral change interventions in long-term care (LTC). Following a cluster randomized trial of an intervention to improve staff communication (CONNECT), we conducted focus groups of direct care staff and managers to elicit their perceptions of factors that enhance or reduce sustainability in the LTC setting. The overall aim was to generate hypotheses about how to sustain complex interventions in LTC. In eight facilities, we conducted 15 focus groups with 83 staff who had participated in at least one intervention session. Where possible, separate groups were conducted with direct care staff and managers. An interview guide probed for staff perceptions of intervention salience and sustainability. Framework analysis of coded transcripts was used to distill insights about sustainability related to intervention features, organizational context, and external supports. Staff described important factors for intervention sustainability that are particularly challenging in LTC. Because of the tremendous diversity in staff roles and education level, interventions should balance complexity and simplicity, use a variety of delivery methods and venues (e.g., group and individual sessions, role-play/storytelling), and be inclusive of many work positions. Intervention customizability and flexibility was particularly prized in this unpredictable and resource-strapped environment. Contextual features noted to be important include addressing the frequent lack of trust between direct care staff and managers and ensuring that direct care staff directly observe manager participation and support for the program. External supports suggested to be useful for sustainability include formalization of changes into facility routines, using "train the trainer" approaches and refresher sessions. High staff turnover is common in LTC, and providing materials for new staff orientation was reported to be important for sustainability. When designing or

Assertiveness and Attitudes of HIV/AIDS Orphaned Girls Towards Education in Kampala (Uganda).

Science.gov (United States)

Kitara, David Lagoro; Amongin, Hellen Christine; Oonyu, Joseph C; Baguma, Peter K

2013-08-09

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 attitudes towards education. Assertiveness is a critical life skill that enables a person to state an opinion, claim a right, or establish authority and it is important to improve attitude towards education. This study examined the relationship between assertiveness and attitude towards education of HIV/AIDS orphaned and non-orphaned adolescent school girls in Kampala. The California Psychological Inventory (CPI) Dominance (Do) Assertiveness Scale and the Attitude Scale were administered to 225 students consecutively selected from 6 secondary schools in Kampala. HIV/AIDS Orphaned girls had lower levels of assertiveness and most had a negative attitude towards education compared to non-orphaned girls. Girls orphaned to HIV/AIDS were less assertive compared to those orphaned by other causes. There was a positive relationship between assertiveness and attitude towards education among orphaned adolescent secondary school girls in Kampala. Girls orphaned to HIV/AIDS were less assertive compared to other school girls and have a poor attitude towards education.

Correlating Orphaned Windows Registry Data Structures

Directory of Open Access Journals (Sweden)

Damir Kahved

2009-06-01

Full Text Available Recently, it has been shown that deleted entries of the Microsoft Windows registry (keys may still reside in the system files once the entries have been deleted from the active database. Investigating the complete keys in context may be extremely important from both a Forensic Investigation point of view and a legal point of view where a lack of context can bring doubt to an argument. In this paper we formalise the registry behaviour and show how a retrieved value may not maintain a relation to the part of the registry it belonged to and hence lose that context. We define registry orphans and elaborate on how they can be created inadvertently during software uninstallation and other system processes. We analyse the orphans and attempt to reconstruct them automatically. We adopt a data mining approach and introduce a set of attributes that can be applied by the forensic investigator to match values to their parents. The heuristics are encoded in a Decision Tree that can discriminate between keys and select those which most likely owned a particular orphan value.

Orphaned and abused youth are vulnerable to pregnancy and suicide risk☆, ☆☆

Science.gov (United States)

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

2015-01-01

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 cross-sectional interviewer-administered surveys completed by 293 orphaned youth aged 16–23 years living outside of family care in St. Petersburg, Russia. We used multivariable logistic regression to estimate adjusted odds ratios (AORs) of LPI and past year suicide ideation associated with childhood physical and sexual abuse. Other risk factors were also examined (e.g., social vulnerability, sexual and substance use behaviors), and characteristics of orphaned youth with LPI and past year suicide ideation were described. Results The prevalence of childhood abuse was higher among females than among males (23.3% versus 15.6% for physical abuse, and 20.3% versus 5.6% for sexual abuse), as was the prevalence of LPI and past year suicide ideation among those with histories of abuse. Experiences of childhood abuse were strong risk factors for both LPI and past year suicide ideation, with significant variation by gender. While both types of abuse were significantly associated with LPI and past year suicide ideation among females, physical abuse was significantly associated with LPI and sexual abuse was associated with suicide ideation for males. Of the other characteristics examined, strong modifiable risk factors included having no one to turn to for help and no involvement in activities outside of class. Among those with LPI (n = 36), nearly 20% had been pregnant or gotten someone pregnant ≥2 times, most (61.8%) reported at least one induced abortion, and current use of effective contraception was nearly non-existent. Among those with past year suicide ideation (n = 30), nearly half (44.8%) reported attempting suicide

Multiple transitions and HIV risk among orphaned Kenyan schoolgirls.

Science.gov (United States)

Mojola, Sanyu A

2011-03-01

Why are orphaned girls at particular risk of acquiring HIV infection? Using a transition-to-adulthood framework, this study employs qualitative data from Nyanza Province, Kenya, to explore pathways to HIV risk among orphaned and nonorphaned high-school girls. It shows how simultaneous processes such as leaving their parental home, negotiating financial access, and relationship transitions interact to produce disproportionate risk for orphaned girls. The role of financial provision and parental love in modifying girls' trajectories to risk are also explored. A testable theoretical model is proposed based on the qualitative findings, and policy implications are suggested.

Tackling the growing number of suspended and orphan wells

International Nuclear Information System (INIS)

Cornford, A.

1996-01-01

The number of suspended and potentially orphaned wells in the three oil producing Western provinces has grown substantially in recent years. There are currently some 38,000 wells in Alberta, 2,000 in B.C., and some 5,000 in Saskatchewan that have been inactive for at least one year. Governments are now looking at proposals to deal with the issue which, if implemented, will have far reaching implications for the oil and gas and reclamation industry in Western Canada. Proposals to date have not dealt with the potential liability for sulphur-recovery gas plants and oil and gas transmission pipelines and associated facilities. It is estimated that to pay for the expanded orphaned well program in Alberta, the current Orphan Well Program would have to be increased from $2 million to $5 million in the first four years. The recommendation is to levy an annual fee on all inactive wells and facilities. This would put the burden of paying for orphan wells on those who have facilities most in risk of becoming orphans. Informed opinion is that while the cost of addressing the problem is admittedly high, however, preventing it from getting worse is much less than the alternative

Hereditary Angioedema: The Economics of Treatment of an Orphan Disease.

Science.gov (United States)

Lumry, William Raymond

2018-01-01

This review will discuss the cost burden of hereditary angioedema on patients, healthcare systems, and society. The impact of availability of and access to novel and specific therapies on morbidity, mortality, and the overall burden of disease will be explored along with potential changes in treatment paradigms to improve effectiveness and reduce cost of treatment. The prevalence of orphan diseases, legislative incentives to encourage development of orphan disease therapies and the impact of orphan disease treatment on healthcare payment systems will be discussed.

Orphan drugs

OpenAIRE

Goločorbin-Kon, Svetlana; Vojinović, Aleksandra; Lalić-Popović, Mladena; Pavlović, Nebojša; Mikov, Momir

2013-01-01

Introduction. 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 ...

Staying Connected: Sustaining Collaborative Care Models with Limited Funding.

Science.gov (United States)

Johnston, Brenda J; Peppard, Lora; Newton, Marian

2015-08-01

Providing psychiatric services in the primary care setting is challenging. The multidisciplinary, coordinated approach of collaborative care models (CCMs) addresses these challenges. The purpose of the current article is to discuss the implementation of a CCM at a free medical clinic (FMC) where volunteer staff provide the majority of services. Essential components of CCMs include (a) comprehensive screening and assessment, (b) shared development and communication of care plans among providers and the patient, and (c) care coordination and management. Challenges to implementing and sustaining a CCM at a FMC in Virginia attempting to meet the medical and psychiatric needs of the underserved are addressed. Although the CCM produced favorable outcomes, sustaining the model long-term presented many challenges. Strategies for addressing these challenges are discussed. Copyright 2015, SLACK Incorporated.

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.

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

Directory of Open Access Journals (Sweden)

Todd Gammie

Full Text Available 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.

[Basic health care. AIDS and children].

Science.gov (United States)

van de Pasch, T

1994-02-17

The total number of children in Africa who died of AIDS is estimated at 700,000. Based on a 30% rate of maternal transmission of HIV infection to children and an annual birth rate of 40/1000, in urban areas about 120,000 children are born with HIV infection. In rural areas the figure is 240,000. In addition, another 120,000 die because of diminished care, thus it is estimated that a total of 480,000 children die of AIDS per year, 30-40% of child mortality of the continent. In the AIDS-affected areas, 30% of children have become orphans. In Katete, Zambia, with a population of 157,000, there are 20,000 orphans, half of whom lost one or both parents because of AIDS, and 2400 of whom lost both parents. A project was designed with the objective of helping orphans. First they had to be counted, using an interview team of 39 persons who visited 450 households in five villages. There were a total of 311 orphans of whom 148 were AIDS orphans. 62% of the 20,000 orphans in the district of Katete do not go to school. In Lusaka in 1990, orphans made up 10% of all children, but 3 years later in Katete, 23% of all children were orphans. The girls are often kept away from school in order to take of their sick mothers. When the father is also sick, there is no more money for school uniforms or fees. In the plans of the St. Francis Hospital AIDS project for 1994-98, a great deal of attention was given to the care of orphans. This will be carried out by local health workers who have taken a course in the hospital and have solid work experience. They will deliver a package containing the most essential necessities for the orphans: school uniform, books, pens, soap, flour, milk powder, and dried beans. There are more projects in the program, including a women's group that wants to sew school uniforms and a health education plan.

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.

Implementation of oral health education to orphan children

International Nuclear Information System (INIS)

Malik, N.

2015-01-01

To determine the knowledge and oral hygiene status of orphange children in apune and a changes in them after health education. Study Design: Interventional study. Place and Duration of Study: Centers for Orphan Children in Pune, India, from April to June 2014. Methodology: 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 post interventional 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. Results: 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 < 0.001) which was significant for each, respectively. Conclusion: There was considerable improvement in the oral hygiene status of orphans due to 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. (author)

Challenges to orphan drugs access in Eastern Europe: the case of Bulgaria.

Science.gov (United States)

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

2012-11-01

This article explores how an Eastern European country could deal with orphan drugs access, combining EU policies with its own national settings. The cross-sectional observational study takes the total number of orphan drugs (61) available on EU level by March 2011, and then consecutively filters it through the requirements and criteria of relevant Bulgarian legislation on registration, pricing and reimbursement of medicinal products, obtaining the final number of accessible orphan drugs (16) in Bulgaria. The study further evaluates the average time period from market authorisation to positive reimbursement decision by Bulgarian health authorities (43±29.1 months). Access to orphan drugs should be provided on a reasonable and justified basis. Having in mind the limited availability of resources, it is not a question whether to prioritise rarity, but to create legitimate mechanisms for properly assessing orphan drugs' value and optimally using this value, according to the society's needs and views. The analysis identifies four important challenges to orphan drugs' access in Eastern Europe: (1) elaboration of new orphan drugs pricing approaches, (2) further interaction of cost-effectiveness analysis with medical criteria, (3) active introduction of epidemiological registries for rare diseases, and (4) research of societal preferences and raising public awareness. Copyright © 2012 Elsevier Ireland Ltd. All rights reserved.

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

Science.gov (United States)

Gammie, Todd

2015-01-01

Objective To review existing regulations and policies utilised by countries to enable patient access to orphan drugs. Methods 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. Results 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. Conclusions 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. PMID:26451948

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.

Search and localization of orphan sources

International Nuclear Information System (INIS)

Gayral, J.-P.

2001-01-01

The control of all radioactive materials should be a major and permanent concern of every state. This paper outlines some of the steps which should be taken in order to detect and localize orphan sources. Two of them are of great importance to any state wishing to resolve the orphan source problem. The first one is to analyse the situation and the second is to establish a strategy before taking action. It is the responsibility of the state to work on the first step; but for the second one it can draw on the advice of the IAEA specialists with experience grained from a variety of situations

Determinants of orphan drugs prices in France: a regression analysis.

Science.gov (United States)

Korchagina, Daria; Millier, Aurelie; Vataire, Anne-Lise; Aballea, Samuel; Falissard, Bruno; Toumi, Mondher

2017-04-21

The introduction of the orphan drug legislation led to the increase in the number of available orphan drugs, but the access to them is often limited due to the high price. Social preferences regarding funding orphan drugs as well as the criteria taken into consideration while setting the price remain unclear. The study aimed at identifying the determinant of orphan drug prices in France using a regression analysis. All drugs with a valid orphan designation at the moment of launch for which the price was available in France were included in the analysis. The selection of covariates was based on a literature review and included drug characteristics (Anatomical Therapeutic Chemical (ATC) class, treatment line, age of target population), diseases characteristics (severity, prevalence, availability of alternative therapeutic options), health technology assessment (HTA) details (actual benefit (AB) and improvement in actual benefit (IAB) scores, delay between the HTA and commercialisation), and study characteristics (type of study, comparator, type of endpoint). The main data sources were European public assessment reports, HTA reports, summaries of opinion on orphan designation of the European Medicines Agency, and the French insurance database of drugs and tariffs. A generalized regression model was developed to test the association between the annual treatment cost and selected covariates. A total of 68 drugs were included. The mean annual treatment cost was €96,518. In the univariate analysis, the ATC class (p = 0.01), availability of alternative treatment options (p = 0.02) and the prevalence (p = 0.02) showed a significant correlation with the annual cost. The multivariate analysis demonstrated significant association between the annual cost and availability of alternative treatment options, ATC class, IAB score, type of comparator in the pivotal clinical trial, as well as commercialisation date and delay between the HTA and commercialisation. The

Community-based capital cash transfer to support orphans in Western Kenya

DEFF Research Database (Denmark)

Skovdal, Morten; Mwasiaji, W.; Morrison, J.

2008-01-01

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...... 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...... that the programme not only increased food availability, but also enhanced social capital. Further research is needed to explore the potential of CCCT in supporting orphans and vulnerable children in countries with high orphanhood rates....

A roadmap for breeding orphan leafy vegetable species

OpenAIRE

Sogbohossou, E.O.D.; Achigan-Dako, Enoch G.; Maundu, Patrick; Solberg, Svein; Deguenon, Edgar M.S.; Mumm, Rita H.; Hale, Iago; Deynze, van, Allen; Schranz, M.E.

2018-01-01

Despite an increasing awareness of the potential of "orphan" or unimproved crops to contribute to food security and enhanced livelihoods for farmers, coordinated research agendas to facilitate production and use of orphan crops by local communities are generally lacking. We provide an overview of the current knowledge on leafy vegetables with a focus on Gynandropsis gynandra, a highly nutritious species used in Africa and Asia, and highlight general and species-specific guidelines for partici...

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

The Fiction of Sustainability

DEFF Research Database (Denmark)

Mubanda Rasmussen, Louise

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...... of international donors, the processes I discuss reflect how actors from their different positions become skilled in using established policy models and available resources for their own ends....

Nuclear Orphan Receptor TLX Induces Oct-3/4 for the Survival and Maintenance of Adult Hippocampal Progenitors upon Hypoxia*

OpenAIRE

Chavali, Pavithra Lakshminarasimhan; Saini, Ravi Kanth Rao; Matsumoto, Yoshiki; Ågren, Hans; Funa, Keiko

2010-01-01

Hypoxia promotes neural stem cell proliferation, the mechanism of which is poorly understood. Here, we have identified the nuclear orphan receptor TLX as a mediator for proliferation and pluripotency of neural progenitors upon hypoxia. We found an enhanced early protein expression of TLX under hypoxia potentiating sustained proliferation of neural progenitors. Moreover, TLX induction upon hypoxia in differentiating conditions leads to proliferation and a stem cell-like phenotype, along with c...

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.

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

African Journals Online (AJOL)

The effects of orphaning on adolescents girls are well documented in literature. 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.

Effects of cash transfers on Children's health and social protection in Sub-Saharan Africa: differences in outcomes based on orphan status and household assets.

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Crea, Thomas M; Reynolds, Andrew D; Sinha, Aakanksha; Eaton, Jeffrey W; Robertson, Laura A; Mushati, Phyllis; Dumba, Lovemore; Mavise, Gideon; Makoni, J C; Schumacher, Christina M; Nyamukapa, Constance A; Gregson, Simon

2015-05-28

Unconditional and conditional cash transfer programmes (UCT and CCT) show potential to improve the well-being of orphans and other children made vulnerable by HIV/AIDS (OVC). We address the gap in current understanding about the extent to which household-based cash transfers differentially impact individual children's outcomes, according to risk or protective factors such as orphan status and household assets. Data were obtained from a cluster-randomised controlled trial in eastern Zimbabwe, with random assignment to three study arms - UCT, CCT or control. The sample included 5,331 children ages 6-17 from 1,697 households. Generalized linear mixed models were specified to predict OVC health vulnerability (child chronic illness and disability) and social protection (birth registration and 90% school attendance). Models included child-level risk factors (age, orphan status); household risk factors (adults with chronic illnesses and disabilities, greater household size); and household protective factors (including asset-holding). Interactions were systematically tested. Orphan status was associated with decreased likelihood for birth registration, and paternal orphans and children for whom both parents' survival status was unknown were less likely to attend school. In the UCT arm, paternal orphans fared better in likelihood of birth registration compared with non-paternal orphans. Effects of study arms on outcomes were not moderated by any other risk or protective factors. High household asset-holding was associated with decreased likelihood of child's chronic illness and increased birth registration and school attendance, but household assets did not moderate the effects of cash transfers on risk or protective factors. Orphaned children are at higher risk for poor social protection outcomes even when cared for in family-based settings. UCT and CCT each produced direct effects on children's social protection which are not moderated by other child- and household

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

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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

[GPCRs heterodimerization: a new way towards the discovery of function for the orphan receptors?].

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Levoye, Angélique; Jockers, Ralf

2007-01-01

G protein-coupled receptors (GPCRs), also called seven transmembrane domain (7TM) proteins, represent the largest family of cell surface receptors. GPCRs control a variety of physiological processes, are involved in multiple diseases and are major drug targets. Despite a vast effort of academic and industrial research, more than one hundred receptors remain orphans. These orphan GPCRs offer a great potential for drug discovery, as almost 60% of currently prescribed drugs target GPCRs. Deorphenization strategies have concentrated mainly on the identification of the natural ligands of these proteins. Recent advances have shown that orphan GPCRs, similar to orphan nuclear receptors, can regulate the function of non-orphan receptors by heterodimerization. These findings not only help to better understand the extraordinary diversity of GPCRs, but also open new perspectives for the identification of the function of these orphan receptors that hold great therapeutic potential.

Solution approaches of social adaptation of orphan children

OpenAIRE

Olga Vahrameeva

2013-01-01

The actual problem of social-cultural activity of boarding schools directed on process of social adaptation of orphan children and children who have remained without guardianship of parents is considered in the article. Author offers use of an individual approach during the work with orphan children. This approach includes carrying out a complex of the interconnected programs of social and pedagogical work with the use of technologies of the social-cultural activity, which main objective is a...

Profitability and Market Value of Orphan Drug Companies: A Retrospective, Propensity-Matched Case-Control Study.

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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.

Emerging health disparities in Botswana: examining the situation of orphans during the AIDS epidemic.

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Miller, Candace Marie; Gruskin, Sofia; Subramanian, S V; Heymann, Jody

2007-06-01

Botswana has the second highest HIV prevalence rate and highest rate of orphanhood in the world. Although child mortality rates have doubled in 15 years, the extent to which health disparities are connected to orphan status remains unclear. We conducted an analysis of the 2000 Botswana Multiple Indicator Cluster Survey to examine whether orphan-based health disparities exist. We measured health inequalities using anthropometric data among 2723 under-five year olds, nested in 1854 households, and 208 communities. We calculated multilevel logistic regression models to estimate the child, household, and regional determinants of growth failure. We found that orphaned children aged 0-4 are 49% more likely to be underweight than nonorphans (ppoverty and other factors; and orphans disproportionately live in the poorest households. Throughout sub-Saharan Africa (SSA), Botswana is a leader in responding to the AIDS epidemic, in particular as one of the first countries to offer universal antiretroviral treatment. However, orphan-based health disparities confirm that the orphan response is still insufficient. Better data are needed to fully understand the mechanisms that lead to these disparities, and the public sector needs an increased capacity to fully implement the policies and programs designed to meet the needs of orphans. Findings from this study have important implications for countries throughout SSA, and Southern Africa in particular, where the number of orphans has doubled to tripled over the past 15 years.

Collaborative care in real-world settings: barriers and opportunities for sustainability

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Sanchez K

2017-01-01

Full Text Available Katherine Sanchez1,2 1School of Social Work, The University of Texas at Arlington, Arlington, 2Department of Psychiatry, University of Texas Southwestern Medical Center, Dallas, TX, USA Abstract: Patient-centered care and self-management of chronic disease are optimally characterized by distinct adjunct services such as education, and support for the behavioral and psychosocial elements of managing disease. The collaborative care model for the treatment of depression and anxiety in primary care includes the integration of a behavioral health specialist, in collaboration with the primary care provider, and psychiatric consultation to effectively screen and treat common mental health problems. Dissemination and sustainability of the model have encountered numerous barriers across systems of care. This article represents a discussion of the key barriers to collaborative care and offers a discussion of opportunities for dissemination and sustainability of the model. Keywords: collaborative care, barriers, depression, anxiety, patient preferences

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

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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.

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.

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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

21 CFR 316.23 - Timing of requests for orphan-drug designation; designation of already approved drugs.

Science.gov (United States)

2010-04-01

...) A sponsor may request orphan-drug designation at any time in the drug development process prior to... 21 Food and Drugs 5 2010-04-01 2010-04-01 false Timing of requests for orphan-drug designation..., DEPARTMENT OF HEALTH AND HUMAN SERVICES (CONTINUED) DRUGS FOR HUMAN USE ORPHAN DRUGS Designation of an Orphan...

The current status of orphan drug development in Europe and the US

OpenAIRE

Hall, Anthony K; Carlson, Marilyn R

2014-01-01

Orphan drug legislation has been introduced in a number of countries in order to stimulate the development of treatments for rare diseases by introducing commercial incentives for companies wishing to undertake that development. In order to navigate the maze of regulatory regulations and procedures so that companies can make proper use of the orphan drug incentives, specialist knowledge is required. This article will review the current status of orphan drug development in the EU and the US, e...

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...... of COPD should qualify for the first criterion if the various conditions that comprise COPD are regarded separately. The subphenotyping of COPD into separate...... groups based on mechanism sets the stage for the rational development of therapeutics. In addition, many candidate treatments may alter the natural history of COPD. Testing them, however, will require large studies for a duration that will compromise the commercial life of any resulting product. Orphan...

Psychosocial Support for Children Orphaned by HIV/AIDS in Zimbabwe

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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…

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

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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.

Orphanhood, Poverty and the Care Dilemma: Review of Global Policy Trends

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Abebe, Tatek

2009-07-01

Full Text Available The care and protection of children experiencing orphanhood presents a major child-care policy challenge. This paper draws on a review of the literature to document divergent conceptualizations of orphanhood, how the hurdles for the care of orphans reflect wider issues of poverty and inequality, as well as the ways in which different care interventions (familial, institutional, community-based and rights-based might be appropriated for children in need. It is argued that the map of contemporary orphanhood overlaps with the contours of global poverty, inequality, age-based deprivations and marginalization. An example of a ‘globalised’ model of orphan care, namely SOS Children’s Villages, is presented and its implications for policy are examined. The paper highlights the significance of fighting poverty and enhancing the care-giving capabilities of extended families in the care and protection of children from a rights-based perspective. It suggests that external interventions should primarily address the structural causes of poverty and marginality, rather than amplifying inequalities through the selective support of orphans in economically vulnerable communities.

Sustaining staff nurse support for a patient care ergonomics program in critical care.

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Haney, Linda L; Wright, Laurette

2007-06-01

Applying management concepts from marketing and business sources can assist critical care units with establishing a planned change in the way nurses perform manual handling tasks, and thus, help insure that it is sustained.

A study of descriptive data for orphans and non-orphans on key criteria of economic vulnerability in two municipalities in South Africa

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Donald Skinner

2013-05-01

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.

Modeling and Deorphanization of Orphan GPCRs.

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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.

Budget impact analysis of drugs for ultra-orphan non-oncological diseases in Europe.

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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.

Reimbursed Price of Orphan Drugs: Current Strategies and Potential Improvements.

Science.gov (United States)

Mincarone, Pierpaolo; Leo, Carlo Giacomo; Sabina, Saverio; Sarriá-Santamera, Antonio; Taruscio, Domenica; Serrano-Aguilar, Pedro Guillermo; Kanavos, Panos

2017-01-01

The pricing and reimbursement policies for pharmaceuticals are relevant to balance timely and equitable access for all patients, financial sustainability, and reward for valuable innovation. The proliferation of high-cost specialty medicines is particularly true in rare diseases (RDs) where the pricing mechanism is characterised by a lack of transparency. This work provides an overall picture of current strategies for the definition of the reimbursed prices of orphan drugs (ODs) and highlights some potential improvements. Current strategies and suggestions are presented along 4 dimensions: (1) comprehensive value assessment, (2) early dialogs among relevant stakeholders, (3) innovative reimbursement approaches, and (4) societal participation in producing ODs. Comprehensive value assessment could be achieved by clarifying the approach of distributive justice to adopt, ensuring a representative participation of stakeholders, and with a broad consideration of value-bearing factors. With respect to early dialogs, cross-border cooperation can be determinant to companies and agencies. The cost-benefit ratio of early dialogs needs to be demonstrated and the "regulatory capture" effect should be monitored. Innovative reimbursement approaches were developed to balance the need for evidence-based decisions with the timely access to innovative drugs. The societal participation in producing ODs needs to be recognised in a collaborating framework where adaptive agreements can be developed with mutual satisfaction. Such agreements could also impact on coverage and reimbursement decisions as additional elements for the determination of a comprehensive societal value of ODs. Further research is needed to investigate the highlighted open challenges so that RDs will not remain, in practical terms, orphan diseases. © 2017 S. Karger AG, Basel.

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

OpenAIRE

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

2014-01-01

Background 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. Methods Using a qualitative descriptive cross-sectional design 14 focus group discussions were conducted with 78 adolescents and 68 parents/guardians purposively sel...

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

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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.

Orphan drugs and the NHS: Should we value rarity

OpenAIRE

Claxton, K.; McCabe, C.; Tsuchiya, A.

2005-01-01

Cost effectiveness plays an important part in current decisions about the funding of health technologies. Drugs for rare disease (orphan drugs) are often expensive to produce and, by definition, will benefit only small numbers of patients. Several countries have put measures in place to safeguard research and development of orphan drugs, but few get close to meeting the cost effectiveness criteria for funding by healthcare providers. We examine the justifications for special status for rare d...

Sustainability in Combining Career and Care: Challenging Normative Beliefs about Parenting

NARCIS (Netherlands)

van Engen, M.L.; Vinkenburg, C.J.; Dikkers, J.S.E.

2012-01-01

In this introduction to the special issue on "Sustainability in Combining Career and Care," we argue that demographic developments such as ageing populations demand attention to the long-term consequences of using family friendly arrangements. In order to create and support sustainability in

The current status of orphan drug development in Europe and the US.

Science.gov (United States)

Hall, Anthony K; Carlson, Marilyn R

2014-02-01

Orphan drug legislation has been introduced in a number of countries in order to stimulate the development of treatments for rare diseases by introducing commercial incentives for companies wishing to undertake that development. In order to navigate the maze of regulatory regulations and procedures so that companies can make proper use of the orphan drug incentives, specialist knowledge is required. This article will review the current status of orphan drug development in the EU and the US, explain the incentives and procedures, and touch on the role of patient organisations in the process.

Exploring impacts of multi-year, community-based care programs for orphans and vulnerable children: a case study from Kenya.

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Larson, Bruce A; Wambua, Nancy; Masila, Juliana; Wangai, Susan; Rohr, Julia; Brooks, Mohamad; Bryant, Malcolm

2013-01-01

The Community-Based Care for Orphans and Vulnerable Children (CBCO) program operated in Kenya during 2006-2010. In Eastern Province, the program provided support to approximately 3000 orphans and vulnerable children (OVC) living in 1500 households. A primary focus of the program was to support savings and loan associations composed of OVC caregivers (typically elderly women) to improve household and OVC welfare. Cross-sectional data were collected in 2011 from 1500 randomly selected households from 3 populations: program participants (CBCO group, n=500), households in the same villages as program participants but not in the program (the local-community-group = Group L, n=300), and households living in nearby villages where the program did not operate (the adjacent-community-group, Group A, n=700). Primary welfare outcomes evaluated are household food security, as measured by the Household Food Insecurity Access instrument, and OVC educational attainment. We compared outcomes between the CBCO and the subset of Group L not meeting program eligibility criteria (L-N) to investigate disparities within local communities. We compared outcomes between the CBCO group and the subset of Group A meeting eligibility criteria (A-E) to consider program impact. We compared outcomes between households not eligible for the program in the local and adjacent community groups (L-N and A-N) to consider if the adjacent communities are similar to the local communities. In May-June 2011, at the end of the OVC program, the majority of CBCO households continued to be severely food insecure, with rates similar to other households living in nearby communities. Participation rates in primary school are high, reflecting free primary education. Among the 18-22 year olds who were "children" during the program years, relatively few children completed secondary school across all study groups. Although the CBCO program likely provided useful services and benefits to program participants, disparities

The use of drawings to facilitate interviews with orphaned children in ...

African Journals Online (AJOL)

children orphaned as a result of AIDS also need to cope with the stigma of, ... with the help of the teachers, used purposive sampling – carried out in two ... Researchers (Creswell, 2002; Denzin & Lincoln, 2000) recommend that before seeking ..... of the orphaned children who offered to share their stories had a positive self-.

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…

Prioritizing orphan proteins for further study using phylogenomics and gene expression profiles in Streptomyces coelicolor

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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.

What makes orphans in Kigali, Rwanda, non-adherent to antiretroviral therapy? Perspectives of their caregivers.

Science.gov (United States)

Kikuchi, Kimiyo; Poudel, Krishna C; Muganda, John; Sato, Tomoko; Mutabazi, Vincent; Muhayimpundu, Ribakare; Majyambere, Adolphe; Nyonsenga, Simon P; Sase, Eriko; Jimba, Masamine

2014-01-01

Every year, approximately 260,000 children are infected with HIV in low- and middle-income countries. The timely initiation and high level of maintenance of antiretroviral therapy (ART) are crucial to reducing the suffering of HIV-positive children. We need to develop a better understanding of the background of children's ART non-adherence because it is not well understood. The purpose of this study is to explore the background related to ART non-adherence, specifically in relation to the orphan status of children in Kigali, Rwanda. We conducted 19 focus group discussions with a total of 121 caregivers of HIV-positive children in Kigali. The primary data for analysis were verbatim transcripts and socio-demographic data. A content analysis was performed for qualitative data analysis and interpretation. The study found several contextual factors that influenced non-adherence: among double orphans, there was psychological distance between the caregivers and children, whereas economic burden was the primary issue among paternal orphans. The factors promoting adherence also were unique to each orphan status, such as the positive attitude about disclosing serostatus to the child by double orphans' caregivers, and feelings of guilt about the child's condition among non-orphaned caregivers. Knowledge of orphan status is essential to elucidate the factors influencing ART adherence among HIV-positive children. In this qualitative study, we identified the orphan-related contextual factors that influenced ART adherence. Understanding the social context is important in dealing with the challenges to ART adherence among HIV-positive children.

The SUSTAIN Project: A European Study on Improving Integrated Care for Older People Living at Home

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Stoop, Annerieke; Billings, Jenny; Leichsenring, Kai; Ruppe, Georg; Tram, Nhu; Barbaglia, María Gabriela; Ambugo, Eliva A.; Zonneveld, Nick; Paat-Ahi, Gerli; Hoffmann, Henrik; Khan, Usman; Stein, Viktoria; Wistow, Gerald; Lette, Manon; Jansen, Aaltje P.D.; Nijpels, Giel; Baan, Caroline A.

2018-01-01

Introduction: Integrated care programmes are increasingly being put in place to provide care to older people who live at home. Knowledge of how to further develop integrated care and how to transfer successful initiatives to other contexts is still limited. Therefore, a cross-European research project, called Sustainable Tailored Integrated Care for Older People in Europe (SUSTAIN), has been initiated with a twofold objective: 1. to collaborate with local stakeholders to support and monitor improvements to established integrated care initiatives for older people with multiple health and social care needs. Improvements focus on person-centredness, prevention orientation, safety and efficiency; 2. to make these improvements applicable and adaptable to other health and social care systems, and regions in Europe. This paper presents the overall structure and approach of the SUSTAIN project. Methods: SUSTAIN uses a multiple embedded case study design. In three phases, SUSTAIN partners: (i) conduct interviews and workshops with stakeholders from fourteen established integrated care initiatives to understand where they would prefer improvements to existing ways of working; (ii) collaborate with local stakeholders to support the design and implementation of improvement plans, evaluate implementation progress and outcomes per initiative, and carry out overarching analyses to compare the different initiatives, and; (iii) translate knowledge and experience to an online roadmap. Discussion: SUSTAIN aims to generate evidence on how to improve integrated care, and apply and transfer the knowledge gained to other health and social care systems, and regions. Lessons learned will be brought together in practical tools to inform and support policy-makers and decision-makers, as well as other stakeholders involved in integrated care, to manage and improve care for older people living at home. PMID:29632456

Sustainability of protocolized handover of pediatric cardiac surgery patients to the intensive care unit.

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Chenault, Kristin; Moga, Michael-Alice; Shin, Minah; Petersen, Emily; Backer, Carl; De Oliveira, Gildasio S; Suresh, Santhanam

2016-05-01

Transfer of patient care among clinicians (handovers) is a common source of medical errors. While the immediate efficacy of these initiatives is well documented, sustainability of practice changes that results in better processes of care is largely understudied. The objective of the current investigation was to evaluate the sustainability of a protocolized handover process in pediatric patients from the operating room after cardiac surgery to the intensive care unit. This was a prospective study with direct observation assessment of handover performance conducted in the cardiac ICU (CICU) of a free-standing, tertiary care children's hospital in the United States. Patient transitions from the operating room to the CICU, including the verbal handoff, were directly observed by a single independent observer in all phases of the study. A checklist of key elements identified errors classified as: (1) technical, (2) information omissions, and (3) realized errors. Total number of errors was compared across the different times of the study (preintervention, postintervention, and the current sustainability phase). A total of 119 handovers were studied: 41 preintervention, 38 postintervention, and 40 in the current sustainability phase. The median [Interquartile range (IQR)] number of technical errors was significantly reduced in the sustainability phase compared to the preintervention and postintervention phase, 2 (1-3), 6 (5-7), and 2.5 (2-4), respectively P = 0.0001. Similarly, the median (IQR) number of verbal information omissions was also significantly reduced in the sustainability phase compared to the preintervention and postintervention phases, 1 (1-1), 4 (3-5) and 2 (1-3), respectively. We demonstrate sustainability of an improved handover process using a checklist in children being transferred to the intensive care unit after cardiac surgery. Standardized handover processes can be a sustainable strategy to improve patient safety after pediatric cardiac surgery. �

Orphan Drug Debate: A Cheat Sheet.

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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.

Oral lesions and dental status among institutionalized orphans in Yemen: A matched case-control study

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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.

Orphan sources

International Nuclear Information System (INIS)

Pust, R.; Urbancik, L.

2008-01-01

The presentation describes how the stable detection systems (hereinafter referred to as S DS ) have contributed to reveal the uncontrolled sources of ionizing radiation on the territory of the State Office for Nuclear Safety (SONS) Brno Regional Centre (RC Brno). It also describes the emergencies which were solved by or in which the workers from the Brno. Regional Centre participated in. The contribution is divided into the following chapters: A. SDS systems installed on the territory of SONS RC Brno; B. Selected unusual emergencies; C. Comments to individual emergencies; D. Aspects of SDS operation in term of their users; E. Aspects of SDS operation and related activities in term of radiation protection; F. Current state of orphan sources. (authors)

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

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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.

Between Charity and Education: Orphans and Orphanages in Early Modern Times

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Jacobi, Juliane

2009-01-01

In early modern times orphans have been children who could not expect sufficient support from their family because of lack of at least one parent, in most cases the father. This article will clarify of whom we are talking if we talk about orphans and what have been the conditions of living in a society which was organised by a high variety of…

Orphan sources control in the Republic of Korea

International Nuclear Information System (INIS)

Kim, C.-W.

2001-01-01

In this paper, the orphan source control programme in Korea will be discussed. Orphan sources are, in general, classified into three groups: 1) Illegally trafficking radioactive sources; 2) Domestic loss of radioactive sources due to the bankruptcy of licensees or authorized suppliers; and 3) Contaminated metal scrap, which has been imported. There are, currently, two approaches going on to control and manage orphan sources in Korea. First, the Korean regulatory authority (Ministry of Science and Technology: MOST) will fully run an information system on radiation safety to effectively trace and monitor all radioactive sources in the country by the year 2001. Second, the regulatory authority strongly advises steel mill companies to closely scrutinize and inspect scrap metal through a scrap monitoring system when they attempt to reutilize it in order to prevent it from being contaminated by uncontrolled sources. The Korea Institute of Nuclear Safety (KINS), a regulatory expert organization, is carrying out a three-year multiphase project to control and monitor orphan sources in Korea. The system, called the Information System on Integrated Radiation Safety (ISIRS) on the inter- and intra-net system has been developed to effectively control and accurately monitor radioactive sources on a real time basis since 1998. If the system is successfully set up as scheduled by the middle of May next year, the regulatory authority will be able to control any reutilization of uncontrolled sources efficiently. At the same time, the system can also provide, not only licensees, suppliers, or perspective end users but also the Korean general public of interests with information on radiation safety, safe radiation management tools and public services. The system has been created because of the necessity to effectively control radioactive sources safely. Also, it serves to prepare necessary protective measures in a timely manner for abnormal events of uncontrolled radiation from

The disposal of orphan wastes using the greater confinement disposal concept

International Nuclear Information System (INIS)

Bonano, E.J.; Chu, M.S.Y.; Price, L.L.; Conrad, S.H.; Dickman, P.T.

1991-01-01

In the United States, radioactive wastes are conventionally classified as high-level wastes, transuranic wastes, or low-level wastes. Each of these types of wastes, by law, has a ''home'' for their final disposal; i.e., high-level wastes are destined for disposal at the proposed repository at Yucca Mountain, transuranic waste for the proposed Waste Isolation Pilot Plant, and low-level waste for shallow-land disposal sites. However, there are some radioactive wastes within the United States Department of Energy (DOE) complex that do not meet the criteria established for disposal of either high-level waste, transuranic waste, or low-level waste. The former are called ''special-case'' or ''orphan'' wastes. This paper describes an ongoing project sponsored by the DOE's Nevada Operations Office for the disposal of orphan wastes at the Radioactive Waste Management Site at Area 5 of the Nevada Test Site using the greater confinement disposal (GCD) concept. The objectives of the GCD project are to evaluate the safety of the site for disposal of orphan wastes by assessing compliance with pertinent regulations through performance assessment, and to examine the feasibility of this disposal concept as a cost-effective, safe alternative for management of orphan wastes within the DOE complex. Decisions on the use of GCD or other alternate disposal concepts for orphan wastes be expected to be addressed in a Programmatic Environmental Impact Statement being prepared by DOE. The ultimate decision to use GCD will require a Record of Decision through the National Environmental Policy Act (NEPA) process. 20 refs., 3 figs., 2 tabs

Multi-criteria decision analysis for assessment and appraisal of orphan drugs

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Georgi Iskrov

2016-09-01

Full Text Available Background: 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 dialogue 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.Objective: The objective of this study was to create a 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.Results/Conclusions: 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 healthcare – equity and fairness. Our study proved that strength of evidence may be a key criterion in orphan drug assessment and appraisal. Evidence is not only used 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

A generalizable pre-clinical research approach for orphan disease therapy

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Beaulieu Chandree L

2012-06-01

Full Text Available Abstract With the advent of next-generation DNA sequencing, the pace of inherited orphan disease gene identification has increased dramatically, a situation that will continue for at least the next several years. At present, the numbers of such identified disease genes significantly outstrips the number of laboratories available to investigate a given disorder, an asymmetry that will only increase over time. The hope for any genetic disorder is, where possible and in addition to accurate diagnostic test formulation, the development of therapeutic approaches. To this end, we propose here the development of a strategic toolbox and preclinical research pathway for inherited orphan disease. Taking much of what has been learned from rare genetic disease research over the past two decades, we propose generalizable methods utilizing transcriptomic, system-wide chemical biology datasets combined with chemical informatics and, where possible, repurposing of FDA approved drugs for pre-clinical orphan disease therapies. It is hoped that this approach may be of utility for the broader orphan disease research community and provide funding organizations and patient advocacy groups with suggestions for the optimal path forward. In addition to enabling academic pre-clinical research, strategies such as this may also aid in seeding startup companies, as well as further engaging the pharmaceutical industry in the treatment of rare genetic disease.

[The Euro-orphans phenomenon and the courses in therapeutic work and psychiatric treatment--a case study].

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Nowak, Marta; Gaweda, Agnieszka; Janas-Kozik, Małgorzata

2012-01-01

Today, the phenomenon of Euro-orphan is more and more frequently reported in the literature. This term refers to children with one or both parents emigrated from the country for work purposes. In connection with the social transformations of orphan-hood types described in the literature (nature, spiritual, social), the definition has been broadened by the definition ofeuro-orphan. The Ministry of Education describes the euro-orphan as the destruction of the family structure, the disorder of the socialisation process of children and reduction of the emotional exchanges among family members, as a result of migration of their parents. It provides further that not every child whose parents are not present in the country is covered as an euro-orphan. However, this group has become an increasingly larger populations. Lack of physical proximity and accessibility of important persons may have some psychological and pedagogical implications. These in turn can be shaped over time, into pathological symptoms, which are diagnostic entities in developmental psychiatry. It is not know precisely how many children in Poland are Euro-orphans. The aim of this paper is an attempt to understand the social phenomenon of Euro-orphanhood in the light of the observed psychopathologies of children and adolescents. The case study of the psychotherapy of a patient suffering from the Euro-orphanhood syndrome. Euro-orphanhood is a social phenomenon that generates Euro-orphans with a wide range of psychopathological symptoms classified in different diagnostic categories. The type and intensification of the psychopathological symptoms depend on the quality of relationships with meaningful persons prior to the Euro-orphanhood period. The course of the psychotherapeutic work with Euro-orphans should cover an individual aspect taking into consideration the maturity of defensive mechanisms as well as the work-through of negative feelings cumulated due to becoming a Euro-orphan.

Therapies for inborn errors of metabolism: what has the orphan drug act delivered?

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Talele, Sonali S; Xu, Kui; Pariser, Anne R; Braun, M Miles; Farag-El-Massah, Sheiren; Phillips, M Ian; Thompson, Barry H; Coté, Timothy R

2010-07-01

The 1983 US Orphan Drug Act established a process through which promising therapies are designated as orphan products and, later, with satisfactory safety and efficacy data, receive marketing approval and fiscal incentives. We examined accomplishments in drug development for inborn errors of metabolism (IEMs). Food and Drug Administration data were used to identify orphan product designations and approvals for IEMs, and the trends for the past 26 years were summarized. Individual clinical development times (CDTs) from filing investigational new drug application to marketing approval were determined. We examined 1956 orphan product designations from 1983 through 2008 and found 93 (4.8%) for IEMs. Of those, 24 (25.8%) received marketing approval. This proportion of approval was significantly (P = .036) higher than that for non-IEM orphan products (17%). Among the IEM products, disorders of complex molecules received the most designations and approvals (61 and 11, respectively). Among the subgroups, lysosomal storage diseases received the most designations and approvals (43 and 9, respectively), whereas mitochondrial diseases (other than fatty acid oxidation disorders) received 7 designations with no approvals. We then examined the CDTs for the approved IEM products and found a median of 6.4 years (range: 2.6-25.1 years). Biological products had significantly shorter CDTs than drugs (mean: 4.6 vs 11.0 years; P = .003). For 26 years, the Orphan Drug Act has generated new therapies for IEMs. Why some IEMs have motivated successful drug development and others have not remains enigmatic; yet the needs of IEM patients without treatment are a certainty.

Fertility among orphans in rural Malawi: challenging common assumptions about risk and mechanisms.

Science.gov (United States)

Kidman, Rachel; Anglewicz, Philip

2014-12-01

Although a substantial literature suggests that orphans suffer disadvantage relative to nonorphaned peers, the nature of this disadvantage and the mechanisms driving it are poorly understood. Some evidence suggests that orphans experience elevated fertility, perhaps because structural disadvantage leads them to engage in sexual risk-taking. An alternative explanation is that orphans intentionally become pregnant to achieve a sense of normality, acceptance and love. Data from the 2006 wave of the Malawi Longitudinal Study of Families and Health on 1,033 young adults aged 15-25 were used to examine the relationship of maternal and paternal orphanhood with sexual risk indicators and desired and actual fertility. Regression analyses were used to adjust for covariates, including social and demographic characteristics and elapsed time since parental death. Twenty-six percent of respondents had lost their father and 15% their mother. Orphanhood was not associated with sexual risk-taking. However, respondents whose mother had died in the past five years desired more children than did those whose mother was still alive (risk differences, 0.52 among women and 0.97 among men). Actual fertility was elevated among women whose father had died more than five years earlier (0.31) and among men whose mother had died in the past five years (1.06) or more than five years earlier (0.47). The elevations in desired and actual fertility among orphans are consistent with the hypothesis that orphans intentionally become pregnant. Strategies that address personal desires for parenthood may need to be part of prevention programs aimed at orphaned youth.

Challenges of ligand identification for the second wave of orphan riboswitch candidates.

Science.gov (United States)

Greenlee, Etienne B; Stav, Shira; Atilho, Ruben M; Brewer, Kenneth I; Harris, Kimberly A; Malkowski, Sarah N; Mirihana Arachchilage, Gayan; Perkins, Kevin R; Sherlock, Madeline E; Breaker, Ronald R

2018-03-04

Orphan riboswitch candidates are noncoding RNA motifs whose representatives are believed to function as genetic regulatory elements, but whose target ligands have yet to be identified. The study of certain orphans, particularly classes that have resisted experimental validation for many years, has led to the discovery of important biological pathways and processes once their ligands were identified. Previously, we highlighted details for four of the most common and intriguing orphan riboswitch candidates. This facilitated the validation of riboswitches for the signaling molecules c-di-AMP, ZTP, and ppGpp, the metal ion Mn 2+ , and the metabolites guanidine and PRPP. Such studies also yield useful linkages between the ligands sensed by the riboswitches and numerous biochemical pathways. In the current report, we describe the known characteristics of 30 distinct classes of orphan riboswitch candidates - some of which have remained unsolved for over a decade. We also discuss the prospects for uncovering novel biological insights via focused studies on these RNAs. Lastly, we make recommendations for experimental objectives along the path to finding ligands for these mysterious RNAs.

Fostering Child Development by Improving Care Quality: A Systematic Review of the Effectiveness of Structural Interventions and Caregiver Trainings in Institutional Care.

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Hermenau, Katharin; Goessmann, Katharina; Rygaard, Niels Peter; Landolt, Markus A; Hecker, Tobias

2017-12-01

Quality of child care has been shown to have a crucial impact on children's development and psychological adjustment, particularly for orphans with a history of maltreatment and trauma. However, adequate care for orphans is often impacted by unfavorable caregiver-child ratios and poorly trained, overburdened personnel, especially in institutional care in countries with limited resources and large numbers of orphans. This systematic review investigated the effects of structural interventions and caregiver trainings on child development in institutional environments. The 24 intervention studies included in this systematic review reported beneficial effects on the children's emotional, social, and cognitive development. Yet, few studies focused on effects of interventions on the child-caregiver relationship or the general institutional environment. Moreover, our review revealed that interventions aimed at improving institutional care settings have largely neglected violence and abuse prevention. Unfortunately, our findings are partially limited by constraints of study design and methodology. In sum, this systematic review sheds light on obstacles and possibilities for the improvement in institutional care. There must be greater efforts at preventing violence, abuse, and neglect of children living in institutional care. Therefore, we advocate for combining attachment theory-based models with maltreatment prevention approaches and then testing them using rigorous scientific standards. By using approaches grounded in the evidence, it could be possible to enable more children to grow up in supportive and nonviolent environments.

Post-marketing access to orphan drugs: a critical analysis of health technology assessment and reimbursement decision-making considerations

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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

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.

Cellular and molecular biology of orphan G protein-coupled receptors.

Science.gov (United States)

Oh, Da Young; Kim, Kyungjin; Kwon, Hyuk Bang; Seong, Jae Young

2006-01-01

The superfamily of G protein-coupled receptors (GPCRs) is the largest and most diverse group of membrane-spanning proteins. It plays a variety of roles in pathophysiological processes by transmitting extracellular signals to cells via heterotrimeric G proteins. Completion of the human genome project revealed the presence of approximately 168 genes encoding established nonsensory GPCRs, as well as 207 genes predicted to encode novel GPCRs for which the natural ligands remained to be identified, the so-called orphan GPCRs. Eighty-six of these orphans have now been paired to novel or previously known molecules, and 121 remain to be deorphaned. A better understanding of the GPCR structures and classification; knowledge of the receptor activation mechanism, either dependent on or independent of an agonist; increased understanding of the control of GPCR-mediated signal transduction; and development of appropriate ligand screening systems may improve the probability of discovering novel ligands for the remaining orphan GPCRs.

Evaluation of the Relevance of Piaget's Cognitive Principles among Parented and Orphan Children in Belagavi City, Karnataka, India: A Comparative Study.

Science.gov (United States)

M Badakar, Chandrashekhar; J Thakkar, Prachi; M Hugar, Shivayogi; Kukreja, Pratibha; G Assudani, Harsha; Gokhale, Niraj

2017-01-01

To determine and compare the relevance of Piaget's cognitive principles among 4- to 7-year-old parented and orphan children in Belagavi City, Karnataka, India. This study was conducted on 240 children between the ages of 4 to 7 years who were equally divided into two groups of 120 parented and 120 orphan children. These were subdivided into four groups of 30 children each. Various characteristics like egocentrism, concept of cardinal numbers based on centration, lack of conservation, and reversibility were assessed, using experiments and comparison of their prevalence between two groups was carried out. There is a statistically significant difference in the cognitive development among parented and orphan children age 4 to 7 years. There is a significantly better cognitive development among parented children as compared with orphan children in Belagavi city. A child is not a miniature adult but rather can think and perceive the world differently from an adult. Understanding a child's intellectual level can enable a pedodontist to deliver improved quality care to children. According to Jean Piaget, in the preoperational period, children think symbolically and their reasoning is based more on appearance rather than logic. It is often rightly said that a child's behavior is a reflection of his parents. However, Piaget did not consider the effect of social setting and culture on the cognitive development. This study was carried out as there is not much literature available to describe the cognitive development of children in the Indian scenario and the influence of parental presence on the same. How to cite this article: Badakar CM, Thakkar PJ, Hugar SM, Kukreja P, Assudani HG, Gokhale N. Evaluation of the Relevance of Piaget's Cognitive Principles among Parented and Orphan Children in Belagavi City, Karnataka, India: A Comparative Study. Int J Clin Pediatr Dent 2017;10(4):346-350.

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.

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

Psychosocial support and parents' social life determine the self-esteem of orphan children

Directory of Open Access Journals (Sweden)

Erango MA

2015-10-01

Full Text Available Markos Abiso Erango,1 Zikie Ataro Ayka2 1School of Mathematical and Statistical Sciences, Department of Applied Statistics, Hawassa University, Hawassa, 2Department of Biology, Arba Minch University, Arba Minch, Ethiopia Abstract: Parental death affects the life of children in many ways, one of which is self-esteem problems. Providing psychosocial support and equipping orphans play a vital role in their lifes. A cross-sectional study was conducted on 7–18-year-old orphans at 17 local districts of Gamo Gofa Zone, Southern Regional State of Ethiopia. From a total of 48,270 orphans in these areas, 4,368 were selected using stratified simple random sampling technique. Data were collected with a designed questionnaire based on the Rosenberg's rating scale to measure their self-esteem levels. Self-esteem with a score less than or equal to an average score was considered to be low self-esteem in the analysis. Binary logistic regression model was used to analyze the data using the SPSS software. The results of the study revealed that the probability of orphans suffering from low self-esteem was 0.59. Several risk factors were found to be significant at the level of 5%. Psychosocial support (good guidance, counseling and treatment, physical protection and amount of love shared, financial and material support, and fellowship with other children, parents living together before death, strong relationship between parents before death, high average monthly income, voluntary support, and consideration from the society are some of the factors that decrease the risk of being low in self-esteem. There are many orphans with low self-esteem in the study areas. The factors negatively affecting the self-esteem of orphans include the lack of psychosocial support, poor social life of parents, and death of parents due to AIDS. Society and parents should be aware of the consequences of these factors which can influence their children's future self

The handling with orphan sources of ionizing radiation in Belarus

International Nuclear Information System (INIS)

Dubrovskij, A.I.; Beresneva, V.A.; Pribylev, S.V.

2013-01-01

In Belarus, the emergency response actions, when detecting orphan sources, provide specific organs of government within their competence. Overall coordination and work on the collection, processing, exchange, accounting and transfer in the established order information about the sources of ionizing radiation interacting organs and relevant international organizations assigned to the Emergency Situations Ministry. Created in Belarus response system in case of detection of orphan sources can provide the level of emergency preparedness and response, and generally satisfy international best practice in this area. (authors)

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

An ultra-HTS process for the identification of small molecule modulators of orphan G-protein-coupled receptors.

Science.gov (United States)

Cacace, Angela; Banks, Martyn; Spicer, Timothy; Civoli, Francesca; Watson, John

2003-09-01

G-protein-coupled receptors (GPCRs) are the most successful target proteins for drug discovery research to date. More than 150 orphan GPCRs of potential therapeutic interest have been identified for which no activating ligands or biological functions are known. One of the greatest challenges in the pharmaceutical industry is to link these orphan GPCRs with human diseases. Highly automated parallel approaches that integrate ultra-high throughput and focused screening can be used to identify small molecule modulators of orphan GPCRs. These small molecules can then be employed as pharmacological tools to explore the function of orphan receptors in models of human disease. In this review, we describe methods that utilize powerful ultra-high-throughput screening technologies to identify surrogate ligands of orphan GPCRs.

National strategies for improving control over orphan sources of ionising radiation

International Nuclear Information System (INIS)

Nizamska, M.

2007-01-01

Since 1989 Bulgaria started reformation of economy sector. Part of this process is the intensive privatisation, as well as in the sited using radioactive materials for different applications - industry, medicine, agriculture, etc. The quick change of property ownership results in difficulties to identify the assessor of radioactive source or material and finally led to appearance of orphan sources. A orphan source is defined as a source that poses sufficient radiological hazard to warrant regulatory control, but which is not under regulatory control because it has never been so, or because it has been abandoned, lost, misplaced, stolen or otherwise transferred without proper authorisation. A face on these problems, Bulgaria is performing a series of measure to improve the control over orphan sources and to strengthening the control over the nuclear and radioactive materials. The report presents briefly this measures. (author)

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…

Assessment of Environmental Sustainability in Health Care Organizations

Directory of Open Access Journals (Sweden)

María Carmen Carnero

2015-06-01

Full Text Available Healthcare organizations should set a standard in corporate social responsibility and encourage environmental sustainability, since protection of the environment implies the development of preventive measures in healthcare. Environmental concern has traditionally focused on manufacturing plants. However, a Health Care Organization (HCO is the only type of company which generates all existing classes of waste, and 20% is dangerous, being infectious, toxic or radioactive in nature. Despite the extensive literature analysing environmental matters, there is no objective model for assessing the environmental sustainability of HCOs in such a way that the results may be compared over time for an organization, and between different organizations, to give a comparison or benchmarking tool for HCOs. This paper presents a Multi-Criteria Decision Analysis model integrating a Fuzzy Analytic Hierarchy Process and utility theory, to evaluate environmental sustainability in HCOs. The model uses criteria assessed as a function of the number of annual treatments undertaken. The model has been tested in two HCOs of very different sizes.

Stigma, marginalization and psychosocial well-being of orphans in Rwanda: exploring the mediation role of social support.

Science.gov (United States)

Caserta, Tehetna Alemu; Pirttilä-Backman, Anna-Maija; Punamäki, Raija-Leena

2016-01-01

Stigma and marginalization are one of the major challenges orphans face in their daily lives, particularly in developing countries, but little is known about their impacts on mental health. This study examines how orphan-related characteristics, stigma and marginalization are associated with psychosocial well-being. It further analyses the role of social support in mediating between stigma and marginalization and mental health, indicated by emotional well-being and mental distress. The participants in this study were 430 Rwandan orphans who were 10-25 years of age, and of whom 179 were females and 251 were males. Results showed that high levels of stigma and marginalization were associated with a lower level of emotional well-being and higher levels of mental distress. A mediation analysis indicated that low level of social support due to stigma and marginalization contributed significantly to low level of emotional well-being. Once stigma, marginalization and social support were fully accounted for, AIDS orphans exhibited higher levels of mental distress than those who were orphaned by genocide or other causes. Future interventions designed to reduce stigma and marginalization for orphans and actions that facilitate social support can significantly improve emotional well-being and reduce mental distress among orphans.

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

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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

Constitutive Activity among Orphan Class-A G Protein Coupled Receptors.

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Adam L Martin

Full Text Available The purpose of this study was to evaluate the extent of constitutive activity among orphan class-A G protein coupled receptors within the cAMP signaling pathway. Constitutive signaling was revealed by changes in gene expression under control of the cAMP response element. Gene expression was measured in Chinese hamster ovary cells transiently co-transfected with plasmids containing a luciferase reporter and orphan receptor. Criteria adopted for defining constitutive activation were: 1 200% elevation over baseline reporter gene expression; 2 40% inhibition of baseline expression; and 3 40% inhibition of expression stimulated by 3 μM forskolin. Five patterns of activity were noted: 1 inhibition under both baseline and forskolin stimulated expression (GPR15, GPR17, GPR18, GPR20, GPR25, GPR27, GPR31, GPR32, GPR45, GPR57, GPR68, GPR83, GPR84, GPR132, GPR150, GPR176; 2 no effect on baseline expression, but inhibition of forskolin stimulated expression (GPR4, GPR26, GPR61, GPR62, GPR78, GPR101, GPR119; 3 elevation of baseline signaling coupled with inhibition of forskolin stimulated expression (GPR6, GPR12; 4 elevation of baseline signaling without inhibition of forskolin stimulated expression (GPR3, GPR21, GPR52, GPR65; and 5 no effect on expression (GPR1, GPR19, GPR22, GPR34, GPR35, GPR39, GPR63, GPR82, GPR85, GPR87. Constitutive activity was observed in 75% of the orphan class-A receptors examined (30 of 40. This constitutive signaling cannot be explained by simple overexpression of the receptor. Inhibition of cAMP mediated expression was far more common (65% than stimulation of expression (15%. Orphan receptors that were closely related based on amino acid homology tended to have similar effects on gene expression. These results suggest that identification of inverse agonists may be a fruitful approach for categorizing these orphan receptors and targeting them for pharmacological intervention.

Constitutive Activity among Orphan Class-A G Protein Coupled Receptors.

Science.gov (United States)

Martin, Adam L; Steurer, Michael A; Aronstam, Robert S

2015-01-01

The purpose of this study was to evaluate the extent of constitutive activity among orphan class-A G protein coupled receptors within the cAMP signaling pathway. Constitutive signaling was revealed by changes in gene expression under control of the cAMP response element. Gene expression was measured in Chinese hamster ovary cells transiently co-transfected with plasmids containing a luciferase reporter and orphan receptor. Criteria adopted for defining constitutive activation were: 1) 200% elevation over baseline reporter gene expression; 2) 40% inhibition of baseline expression; and 3) 40% inhibition of expression stimulated by 3 μM forskolin. Five patterns of activity were noted: 1) inhibition under both baseline and forskolin stimulated expression (GPR15, GPR17, GPR18, GPR20, GPR25, GPR27, GPR31, GPR32, GPR45, GPR57, GPR68, GPR83, GPR84, GPR132, GPR150, GPR176); 2) no effect on baseline expression, but inhibition of forskolin stimulated expression (GPR4, GPR26, GPR61, GPR62, GPR78, GPR101, GPR119); 3) elevation of baseline signaling coupled with inhibition of forskolin stimulated expression (GPR6, GPR12); 4) elevation of baseline signaling without inhibition of forskolin stimulated expression (GPR3, GPR21, GPR52, GPR65); and 5) no effect on expression (GPR1, GPR19, GPR22, GPR34, GPR35, GPR39, GPR63, GPR82, GPR85, GPR87). Constitutive activity was observed in 75% of the orphan class-A receptors examined (30 of 40). This constitutive signaling cannot be explained by simple overexpression of the receptor. Inhibition of cAMP mediated expression was far more common (65%) than stimulation of expression (15%). Orphan receptors that were closely related based on amino acid homology tended to have similar effects on gene expression. These results suggest that identification of inverse agonists may be a fruitful approach for categorizing these orphan receptors and targeting them for pharmacological intervention.

The role of Vinca Institute in national Orphan sources recovery program

International Nuclear Information System (INIS)

Orlic, Milan; Pavlovic, Snezana; Gajic-Kvascev, Maja

2008-01-01

Full text: According with establishing of radiation safety regulatory system of Republic of Serbia, Goverment of Republic of Serbia in cooperation with international community (IAEA, DOE), has developed a national Orphan sources recovery program. The role, possibilities the results of Vinca Institute in that program has been presented in this paper. The main goal of the program is to put all orphan sources found in Serbia in storage in Vinca Institute, and restore regulatory control. In this paper existing state of Orphan sources programe, goals of the system development, programmes for seaching of sources, plans, stuff education and training are given. Special concern was given to planning process for seaching of sources. It includes decission on location to be treated, quantity and types of expected source estimation and resources wich will be used. Plan of training includes radiation protection and quality assurance aspects. (author)

Orphan Drug Pricing: An Original Exponential Model Relating Price to the Number of Patients

Directory of Open Access Journals (Sweden)

Andrea Messori

2016-10-01

Full Text Available In managing drug prices at the national level, orphan drugs represent a special case because the price of these agents is higher than that determined according to value-based principles. A common practice is to set the orphan drug price in an inverse relationship with the number of patients, so that the price increases as the number of patients decreases. Determination of prices in this context generally has a purely empirical nature, but a theoretical basis would be needed. The present paper describes an original exponential model that manages the relationship between price and number of patients for orphan drugs. Three real examples are analysed in detail (eculizumab, bosentan, and a data set of 17 orphan drugs published in 2010. These analyses have been aimed at identifying some objective criteria to rationally inform this relationship between prices and patients and at converting these criteria into explicit quantitative rules.

Psychological distress and its predictors in AIDS orphan ...

African Journals Online (AJOL)

Structured interviewer administered questionnaire and scales including HAD, Rosenberg's and MPSS scales were used to measure the orphans' level of depression, anxiety, self-esteem and their perceived social support. Result: Among the ...

Nurturing Care for China's Orphaned Children

Science.gov (United States)

Cotton, Janice N.; Edwards, Carolyn Pope; Zhao, Wen; Gelabert, Jeronia Muntaner

2007-01-01

Half the Sky, an international NGO, works in partnership with Chinese national and provincial governments inside state-run orphanages (welfare institutions). Through their infant nurture programs infants and toddlers in institutions begin to thrive through primary relationship-based care by trained community paraprofessionals. In preschool…

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

Psychosocial support and parents' social life determine the self-esteem of orphan children.

Science.gov (United States)

Erango, Markos Abiso; Ayka, Zikie Ataro

2015-01-01

Parental death affects the life of children in many ways, one of which is self-esteem problems. Providing psychosocial support and equipping orphans play a vital role in their lifes. A cross-sectional study was conducted on 7-18-year-old orphans at 17 local districts of Gamo Gofa Zone, Southern Regional State of Ethiopia. From a total of 48,270 orphans in these areas, 4,368 were selected using stratified simple random sampling technique. Data were collected with a designed questionnaire based on the Rosenberg's rating scale to measure their self-esteem levels. Self-esteem with a score less than or equal to an average score was considered to be low self-esteem in the analysis. Binary logistic regression model was used to analyze the data using the SPSS software. The results of the study revealed that the probability of orphans suffering from low self-esteem was 0.59. Several risk factors were found to be significant at the level of 5%. Psychosocial support (good guidance, counseling and treatment, physical protection and amount of love shared, financial and material support, and fellowship with other children), parents living together before death, strong relationship between parents before death, high average monthly income, voluntary support, and consideration from the society are some of the factors that decrease the risk of being low in self-esteem. There are many orphans with low self-esteem in the study areas. The factors negatively affecting the self-esteem of orphans include the lack of psychosocial support, poor social life of parents, and death of parents due to AIDS. Society and parents should be aware of the consequences of these factors which can influence their children's future self-esteem.

orphans in mediterranean antiquity and early christianity

African Journals Online (AJOL)

animalium 588a8).3 Yet we must immediately qualify these studies and statements by .... of Anna in Luke 2:3637, who was married for just seven years, yet was still living as a ... has unlimited power, whereas the orphan has none. In what ...

A transition program to primary health care for new graduate nurses: a strategy towards building a sustainable primary health care nurse workforce?

Science.gov (United States)

Gordon, Christopher J; Aggar, Christina; Williams, Anna M; Walker, Lynne; Willcock, Simon M; Bloomfield, Jacqueline

2014-01-01

This debate discusses the potential merits of a New Graduate Nurse Transition to Primary Health Care Program as an untested but potential nursing workforce development and sustainability strategy. Increasingly in Australia, health policy is focusing on the role of general practice and multidisciplinary teams in meeting the service needs of ageing populations in the community. Primary health care nurses who work in general practice are integral members of the multidisciplinary team - but this workforce is ageing and predicted to face increasing shortages in the future. At the same time, Australia is currently experiencing a surplus of and a corresponding lack of employment opportunities for new graduate nurses. This situation is likely to compound workforce shortages in the future. A national nursing workforce plan that addresses supply and demand issues of primary health care nurses is required. Innovative solutions are required to support and retain the current primary health care nursing workforce, whilst building a skilled and sustainable workforce for the future. This debate article discusses the primary health care nursing workforce dilemma currently facing policy makers in Australia and presents an argument for the potential value of a New Graduate Transition to Primary Health Care Program as a workforce development and sustainability strategy. An exploration of factors that may contribute or hinder transition program for new graduates in primary health care implementation is considered. A graduate transition program to primary health care may play an important role in addressing primary health care workforce shortages in the future. There are, however, a number of factors that need to be simultaneously addressed if a skilled and sustainable workforce for the future is to be realised. The development of a transition program to primary health care should be based on a number of core principles and be subjected to both a summative and cost

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

resources is concerned. The EU is very proactive in fostering research and development of medicinal products aimed at treating patients who suffer from rare diseases. The European incentive scheme (Regulation (EC) No. 141/2000) has been a considerable success but, although products are developed......, 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...... medicine) are concerned. The provision in the Patients’ Rights Directive (Dir. 2011/27/EU) on cooperation in health care among the Member States is discussed through the lens of ‘solidarity’ (understood as mutual cooperation) in order to align and remedy the deficits in the system and guarantee the patient...

Epidemiology of health and vulnerability among children orphaned and made vulnerable by HIV/AIDS in sub-Saharan Africa.

Science.gov (United States)

Andrews, Gail; Skinner, Donald; Zuma, Khangelani

2006-04-01

The HIV/AIDS epidemic in sub-Saharan Africa has already orphaned a generation of children, and it is projected that by 2010, 18 million African children under the age of 18 are likely to be orphans from this single cause (UNICEF, 2005, The state of the Worlds Children: Childhood under threat. New York: UNICEF). Results from a Kellogg funded OVC project (Skinner et al., 2004, Definition of orphaned and vulnerable children. Cape Town: HSRC) supported the construct that the loss of either or both parents would indicate a situation of likely vulnerability of children. A key problem in the literature on the impact of orphanhood on the well-being of children, families and communities, is that the focus of assertions and predictions is often on the negative impact on 'AIDS orphans', or households. There are hardly any studies that compare the experiences of orphans with non-orphans. This paper thus attempts to fill that gap. It uses epidemiological data to explore the epidemiology of health and vulnerability of children within the context of AIDS in sub-Saharan Africa. Because of data limitations, only the following aspects are examined: (i) orphan status; (ii) household structure (in particular, grandparent headedness and female-headedness); (iii) illness of parents; (iv) poverty; and (v) access to services, especially schooling, health, social services. While recognizing the limitations of the analysis, data presented in this paper indicates that orphans in sub-Saharan Africa are more vulnerable than non-orphans. The authors conclude with some suggestions for policy makers and programme implementers, highlighting the importance of focusing on interventions that will have maximum impact on the health and well-being of children.

High GC content causes orphan proteins to be intrinsically disordered.

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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.

Orphan Products: Hope for People with Rare Diseases

Science.gov (United States)

... drug and biologics manufacturers, including tax credits for costs of clinical research, government grant funding, assistance for clinical research, and a seven-year period of exclusive marketing given to the first sponsor of an orphan- ...

What is known about the cost-effectiveness of orphan drugs? Evidence from cost-utility analyses.

Science.gov (United States)

Picavet, E; Cassiman, D; Simoens, S

2015-06-01

In times of financial and economic hardship, governments are looking to contain pharmaceutical expenditure by focusing on cost-effective drugs. Because of their high prices and difficulties in demonstrating effectiveness in small patient populations, orphan drugs are often perceived as not able to meet traditional reimbursement threshold value for money. The aim of this study was to provide an overview of the available evidence on the cost-effectiveness of orphan drugs. All orphan drugs listed as authorized on the website of the European Medicines Agency on 21 November 2013 were included in the analysis. Cost-utility analyses (CUAs) were identified by searching the Tufts Medical Center Cost-Effectiveness Analysis Registry and Embase. For each CUA, a number of variables were collected. The search identified 23 articles on the Tufts registry and 167 articles on Embase. The final analysis included 45 CUAs and 61 incremental cost-utility ratios (ICURs) for 19 orphan drugs. Of all ICURS, 16·3% were related to dominant drugs (i.e. more effective and less expensive than the comparator), 70·5% were related to drugs that are more effective, but at a higher cost, and 13·1% were related to dominated drugs (i.e. less effective and more expensive than the comparator). The median overall ICUR was €40 242 per quality-adjusted life year (QALY) with a minimum ICUR of €6311/QALY and a maximum ICUR of €974,917/QALY. This study demonstrates that orphan drugs can meet traditional reimbursement thresholds. Considering a threshold of £30,000/QALY, in this study, ten (52·6%) of a total of 19 orphan drugs for which data were available meet the threshold. As much as fifteen orphan drugs (78·9%) are eligible for reimbursement if a threshold of €80,000/QALY is considered. © 2015 John Wiley & Sons Ltd.

Control of orphan sources. Import to and transport through Slovenia

International Nuclear Information System (INIS)

Cesarek, J.; Vokal Nemec, B.

2007-01-01

Orphan sources are radioactive sources which are not under regulatory control, either because they have never been under regulatory control, or because they have been abandoned, lost, misplaced, stolen or transferred without proper authorisation. The issue of orphan sources is not a new one but the situation has been highlighted more and more in the last ten years. One of the most important international milestones in this regard was the conference in Dijon, France in 1998. The orphan sources have become an international problem due to steady increase in international trade which made impossible to control every transfer of goods between countries. Shipments of metal scrap, either national or international, could comprise orphan sources which had come into metal stream. The consequences of such events vary greatly: from contaminated metal just above exemption levels to a melting of volatile radionuclides of significant activity which may cause enormous remediation costs. In addition, the phenomenon of deliberate abuse of nuclear material and radioactive material or previous accidents with found orphan sources worldwide and fatalities have made this issue even more provoking. In Slovenia, no such drastic events have occurred so far. Since 1991 there have been a few meltings of cobalt-60 sources with only economic impact. On several occasions, Italy - the country with strict import control - has detected elevated radiation and denied shipments of scrap metal. They had originated either from Slovenia or from other countries, mostly from former Yugoslav republics. The Slovenian experience shows that majority of cases is related to import of scrap metal in Slovenia or to transit of such material through Slovenia. These orphan sources have originated from past industrial activities or have been under no or weak regulatory control in their countries of origin. In order to prevent inadvertent movement and illicit trafficking of nuclear material and radioactive sources some

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

OpenAIRE

Ranse, K; Bloomer, M; Coombs, M; Endacott, R

2016-01-01

publisher: Elsevier articletitle: 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 journaltitle: Australian Critical Care articlelink: http://dx.doi.org/10.1016/j.aucc.2016.08.006 content_type: article copyright: © 2016 Australian College of Critical Care Nurses Ltd. Published by Elsevier Ltd. All rights reserved.

[Sustainability analysis of an evaluation policy: the case of primary health care in Brazil].

Science.gov (United States)

Felisberto, Eronildo; Freese, Eduardo; Bezerra, Luciana Caroline Albuquerque; Alves, Cinthia Kalyne de Almeida; Samico, Isabella

2010-06-01

This study analyzes the sustainability of Brazil's National Policy for the Evaluation of Primary Health Care, based on the identification and categorization of representative critical events in the institutionalization process. This was an evaluative study of two analytical units: Federal Management of Primary Health Care and State Health Secretariats, using multiple case studies with data collected through interviews and institutional documents, using the critical incidents technique. Events that were temporally classified as specific to implementation, sustainability, and mixed were categorized analytically as pertaining to memory, adaptation, values, and rules. Federal management and one of the State Health Secretariats showed medium-level sustainability, while the other State Secretariat showed strong sustainability. The results indicate that the events were concurrent and suggest a weighting process, since the adaptation of activities, adequacy, and stabilization of resources displayed a strong influence on the others. Innovations and the development of technical capability are considered the most important results for sustainability.

Orphan Drug Regulation: A missed opportunity for children and adolescents with cancer.

Science.gov (United States)

Vassal, Gilles; Kearns, Pam; Blanc, Patricia; Scobie, Nicole; Heenen, Delphine; Pearson, Andy

2017-10-01

Oncology represents a major sector in the field of orphan drug development in Europe. The objective was to evaluate whether children and adolescents with cancer benefited from the Orphan Drug Regulation. Data on orphan drug designations (ODDs) and registered orphan drugs from 8th August 2000 to 10th September 2016 were collected from the Community Register of medicinal products for human use. Assessment history, product information and existence of paediatric investigation plans were searched and retrieved from the European Medicine Agency website. Over 16 years, 272 of 657 oncology ODDs (41%) concerned a malignant condition occurring both in adults and children. The five most common were acute myeloid leukaemia, high-grade glioma, acute lymphoblastic leukaemia, graft-versus-host disease and soft-tissue sarcomas. 74% of 31 marketing authorisations (MAs) for an indication both in adults and children (26 medicines) had no information for paediatric use in their Summary of Product Characteristics (SmPC) at the time of the first MA. Furthermore, 68% still have no paediatric information in their most recently updated SmPC, at a median of 7 years after. Only 15 ODDs (2%) pertained to a malignancy occurring specifically in children and only two drugs received an MA: Unituxin for high-risk neuroblastoma and Votubia for sub-ependymal giant-cell astrocytoma. The Orphan Drug Regulation failed to promote the development of innovative therapies for malignancies occurring in children. Major delays and waivers occurred through the application of the Paediatric Medicines Regulation. The European regulatory environment needs to be improved to accelerate innovation for children and adolescents dying of cancer. Copyright © 2017 Elsevier Ltd. All rights reserved.

Affordability Challenges to Value-Based Pricing: Mass Diseases, Orphan Diseases, and Cures.

Science.gov (United States)

Danzon, Patricia M

2018-03-01

To analyze how value-based pricing (VBP), which grounds the price paid for pharmaceuticals in their value, can manage "affordability" challenges, defined as drugs that meet cost-effectiveness thresholds but are "unaffordable" within the short-run budget. Three specific contexts are examined, drawing on recent experience. First, an effective new treatment for a chronic, progressive disease, such as hepatitis C, creates a budget spike that is transitory because initial prevalence is high, relative to current incidence. Second, "cures" that potentially provide lifetime benefits may claim abnormally high VBP prices, with high immediate budget impact potentially/partially offset by deferred cost savings. Third, although orphan drugs in principle target rare diseases, in aggregate they pose affordability concerns because of the growing number of orphan indications and increasingly high prices. For mass diseases, the transitory budget impact of treating the accumulated patient stock can be managed by stratified rollout that delays treatment of stable patients and prioritizes patients at high risk of deterioration. Delay spreads the budget impact and permits potential savings from launch of competing treatments. For cures, installment payments contingent on outcomes could align payment flows and appropriately shift risk to producers. This approach, however, entails high administrative and incentive costs, especially if applied across multiple payers in the United States. For orphan drugs, the available evidence on research and development trends and returns argues against the need for a higher VBP threshold to incentivize research and development in orphan drugs, given existing statutory benefits under orphan drug legislation. Copyright © 2018 International Society for Pharmacoeconomics and Outcomes Research (ISPOR). Published by Elsevier Inc. All rights reserved.

The role of globalization in drug development and access to orphan drugs: orphan drug legislation in the US/EU and in Latin America.

Science.gov (United States)

Arnold, Renée J G; Bighash, Lida; Bryón Nieto, Alejandro; Tannus Branco de Araújo, Gabriela; Gay-Molina, Juan Gabriel; Augustovski, Federico

2015-01-01

Compared to a decade ago, nearly three times as many drugs for rare diseases are slated for development. This article addresses the market access issues associated with orphan drug status in Europe and the United States in contrast to the legislation in five Latin American (LA) countries that have made strides in this regard--Mexico, Brazil, Colombia, Chile and Argentina. Based on the success of orphan drug legislation in the EU and US, LA countries should strive to adopt similar strategies with regard to rare diseases and drug development. With the implementation of new targeted regulations, reimbursement strategies, and drug approvals, accessibility to treatment will be improved for people afflicted with rare diseases in these developing countries.

Orphans in the Dead Sea Scrolls

African Journals Online (AJOL)

2016-08-12

Aug 12, 2016 ... ISSN: (Online) 2072-8050, (Print) 0259-9422 ... Orphans also feature in some non-biblical compositions of the .... (ntk ἰt n nmḥ hἰ n ḫᴈrt sn n wḏᶜt šndyt nt ἰwty mwt.f) (P.Berlin .... Collins (2010:7) defines 'sect' in the following ...... 2014, Social and economic life in second temple Judea, Westminster John.

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.

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.

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

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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

A proposal for prevention of acute radiation hazard and social panic regarding orphan sources in Japan

Energy Technology Data Exchange (ETDEWEB)

Takahash, T. [Research Reactor Institute, Kyoto Univ., Osaka (Japan); Kai, M. [Oita Univ., of Nursing and Health Sciences, Oita (Japan); Yamazaki, K. [Chiyoda Technol Corporation, Tokyo (Japan); Gomi, K. [Japan Radioisotope Association, Tokyo (Japan); Nakazato, K. [School of Medicine, Keio univ., Tokyo (Japan); Iida, T. [Nagoya Univ., Nagoya (Japan)

2002-07-01

To respond to an increase of social problems concerning orphan sources in Japan, a working group was formed in the Japan Health Physics Society. In this working group, we investigated how to prevent acute radiation hazard or social panic regarding orphan sources in scrap metal and detection system for orphan sources brought into scrap yards before recycle. For detection system in a scrap yard we conducted an experiment on detectability of monitoring instrument using a radiation source mixed in scrap metal on a truck. The result showed that it was not easy to detect even a high-level source if it was shielded by scrap metal. We also estimated detection limits for radioactive materials in scrap metal by calculation that was validated with experimental data. We summarized present status about orphan sources in Japan and proposed a categorization of orphan sources according to dose rates to deal with unknown sources in a scrap yard. Our report includes some proposals to the government, industry and academic world for preventing acute radiation hazard and social panic.

A proposal for prevention of acute radiation hazard and social panic regarding orphan sources in Japan

International Nuclear Information System (INIS)

Takahash, T.; Kai, M.; Yamazaki, K.; Gomi, K.; Nakazato, K.; Iida, T.

2002-01-01

To respond to an increase of social problems concerning orphan sources in Japan, a working group was formed in the Japan Health Physics Society. In this working group, we investigated how to prevent acute radiation hazard or social panic regarding orphan sources in scrap metal and detection system for orphan sources brought into scrap yards before recycle. For detection system in a scrap yard we conducted an experiment on detectability of monitoring instrument using a radiation source mixed in scrap metal on a truck. The result showed that it was not easy to detect even a high-level source if it was shielded by scrap metal. We also estimated detection limits for radioactive materials in scrap metal by calculation that was validated with experimental data. We summarized present status about orphan sources in Japan and proposed a categorization of orphan sources according to dose rates to deal with unknown sources in a scrap yard. Our report includes some proposals to the government, industry and academic world for preventing acute radiation hazard and social panic

A review of international coverage and pricing strategies for personalized medicine and orphan drugs.

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Degtiar, Irina

2017-12-01

Personalized medicine and orphan drugs share many characteristics-both target small patient populations, have uncertainties regarding efficacy and safety at payer submission, and frequently have high prices. Given personalized medicine's rising importance, this review summarizes international coverage and pricing strategies for personalized medicine and orphan drugs as well as their impact on therapy development incentives, payer budgets, and therapy access and utilization. PubMed, Health Policy Reference Center, EconLit, Google Scholar, and references were searched through February 2017 for articles presenting primary data. Sixty-nine articles summarizing 42 countries' strategies were included. Therapy evaluation criteria varied between countries, as did patient cost-share. Payers primarily valued clinical effectiveness; cost was only considered by some. These differences result in inequities in orphan drug access, particularly in smaller and lower-income countries. The uncertain reimbursement process hinders diagnostic testing. Payer surveys identified lack of comparative effectiveness evidence as a chief complaint, while manufacturers sought more clarity on payer evidence requirements. Despite lack of strong evidence, orphan drugs largely receive positive coverage decisions, while personalized medicine diagnostics do not. As more personalized medicine and orphan drugs enter the market, registries can provide better quality evidence on their efficacy and safety. Payers need systematic assessment strategies that are communicated with more transparency. Further studies are necessary to compare the implications of different payer approaches. Copyright © 2017 Elsevier B.V. All rights reserved.

Systematic review on the evaluation criteria of orphan medicines in Central and Eastern European countries.

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Zelei, Tamás; Molnár, Mária J; Szegedi, Márta; Kaló, Zoltán

2016-06-04

In case of orphan drugs applicability of the standard health technology assessment (HTA) process is limited due to scarcity of good clinical and health economic evidence. Financing these premium priced drugs is more controversial in the Central and Eastern European (CEE) region where the public funding resources are more restricted, and health economic justification should be an even more important aspect of policy decisions than in higher income European countries. To explore and summarize the recent scientific evidence on value drivers related to the health technology assessment of ODs with a special focus on the perspective of third party payers in CEE countries. The review aims to list all potentially relevant value drivers in the reimbursement process of orphan drugs. A systematic literature review was performed; PubMed and Scopus databases were systematically searched for relevant publications until April 2015. Extracted data were summarized along key HTA elements. From the 2664 identified publications, 87 contained relevant information on the evaluation criteria of orphan drugs, but only 5 had direct information from the CEE region. The presentation of good clinical evidence seems to play a key role especially since this should be the basis of cost-effectiveness analyses, which have more importance in resource-constrained economies. Due to external price referencing of pharmaceuticals, the relative budget impact of orphan drugs is expected to be higher in CEE than in Western European (WE) countries unless accessibility of patients remains more limited in poorer European regions. Equity principles based on disease prevalence and non-availability of alternative treatment options may increase the price premium, however, societies must have some control on prices and a rationale based on multiple criteria in reimbursement decisions. The evaluation of orphan medicines should include multiple criteria to appropriately measure the clinical added value of orphan

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

Selecting, adapting, and sustaining programs in health care systems

Directory of Open Access Journals (Sweden)

Zullig LL

2015-04-01

Full Text Available Leah L Zullig,1,2 Hayden B Bosworth1–4 1Center for Health Services Research in Primary Care, Durham Veterans Affairs Medical Center, Durham, NC, USA; 2Department of Medicine, Duke University Medical Center, Durham, NC, USA; 3School of Nursing, 4Department of Psychiatry and Behavioral Sciences, Duke University, Durham, NC, USA Abstract: Practitioners and researchers often design behavioral programs that are effective for a specific population or problem. Despite their success in a controlled setting, relatively few programs are scaled up and implemented in health care systems. Planning for scale-up is a critical, yet often overlooked, element in the process of program design. Equally as important is understanding how to select a program that has already been developed, and adapt and implement the program to meet specific organizational goals. This adaptation and implementation requires attention to organizational goals, available resources, and program cost. We assert that translational behavioral medicine necessitates expanding successful programs beyond a stand-alone research study. This paper describes key factors to consider when selecting, adapting, and sustaining programs for scale-up in large health care systems and applies the Knowledge to Action (KTA Framework to a case study, illustrating knowledge creation and an action cycle of implementation and evaluation activities. Keywords: program sustainability, diffusion of innovation, information dissemination, health services research, intervention studies 

Nursing and the barriers to sustainable health care: a literature review.

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Griggs, Chloe; Fernandez, Ana; Callanan, Margie

2017-12-14

global warming poses a serious threat to human health, yet healthcare organisations and staff have been relatively slow to engage with sustainable healthcare practices. This review of the literature seeks to frame what is already known about nurses and their views on global warming and sustainable health care. 11 primary research articles were sourced from a search of five mainstream databases. These articles were subject to a basic thematic analysis. six themes were identified: sustainability, endemic blindness to global issues, environmental numbness, social norms, priority assigned to sustainability, and psychology of responsibility and blame. from the literature reviewed, there are a number of social, cultural and psychological barriers that have led to widespread inaction. This article recommends further research to understand the psychological barriers in more depth as this is a poorly understood area.

THE DEVELOPMENT AND USE OF A MODEL TO PREDICT SUSTAINABILITY OF CHANGE IN HEALTH CARE SETTINGS.

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Molfenter, Todd; Ford, James H; Bhattacharya, Abhik

2011-01-01

Innovations adopted through organizational change initiatives are often not sustained leading to diminished quality, productivity, and consumer satisfaction. Research explaining variance in the use of adopted innovations in health care settings is sparse, suggesting the need for a theoretical model to guide research and practice. In this article, we describe the development of a hybrid conjoint decision theoretic model designed to predict the sustainability of organizational change in health care settings. An initial test of the model's predictive validity using expert scored hypothetic profiles resulted in an r-squared value of .77. The test of this model offers a theoretical base for future research on the sustainability of change in health care settings.

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

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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.

Sustaining Transfers through Affordable Research Translation (START): study protocol to assess knowledge translation interventions in continuing care settings.

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Slaughter, Susan E; Estabrooks, Carole A; Jones, C Allyson; Wagg, Adrian S; Eliasziw, Misha

2013-10-26

Bridging the research-practice gap is an important research focus in continuing care facilities, because the population of older adults (aged 65 years and over) requiring continuing care services is the fastest growing demographic among countries in the Organisation for Economic Co-operation and Development (OECD). Unlicensed practitioners, known as health care aides, provide the majority of care for residents living in continuing care facilities. However, little research examines how to sustain health care aide behavior change following initial adoption of current research evidence. We will conduct a phase III, multicentre, cluster randomized controlled trial (RCT) using a stratified 2 × 2 additive factorial design, including an embedded process evaluation, in 24 supportive living facilities within the health zone of Edmonton, AB, Canada. We will determine which combination of frequency and intensity of reminders most effectively sustains the completion of the sit-to-stand activity by health care aides with residents. Frequency refers to how often a reminder is implemented; intensity refers to whether a reminder is social or paper-based. We will compare monthly reminders with reminders implemented every 3 months, and we will compare low intensity, paper-based reminders and high intensity reminders provided by a health care aide peer.Using interviews, questionnaires, and observations, Sustaining Transfers through Affordable Research Translation (START) will evaluate the processes that inhibit or promote the mobility innovation's sustainability among health care aides in daily practice. We will examine how the reminders are implemented and perceived by health care aides and licensed practical nurses, as well as how health care aides providing peer reminders are identified, received by their peers, and supported by their supervisors. START will connect up-to-date innovation research with the practice of health care aides providing direct care to a growing population

78 FR 5828 - Agency Information Collection Activities: Petition To Classify Orphan as an Immediate Relative...

Science.gov (United States)

2013-01-28

...-0028] Agency Information Collection Activities: Petition To Classify Orphan as an Immediate Relative, Form I-600; Application for Advance Processing of Orphan Petition, Form I-600A; Listing of Adult Member... are encouraged and will be accepted until February 27, 2013. This process is conducted in accordance...

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 ... diet in India, for example, accompanying almost every Indian meal. ... Canada's niche is high-quality pulses that we sell to the emerging ...

From orphan virus to pathogen: the path to the clinical lab.

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Li, Linlin; Delwart, Eric

2011-10-01

Viral metagenomics has recently yielded numerous previously uncharacterized viral genomes from human and animal samples. We review some of the metagenomics tools and strategies to determine which orphan viruses are likely pathogens. Disease association studies compare viral prevalence in patients with unexplained symptoms versus healthy individuals but require these case and control groups to be closely matched epidemiologically. The development of an antibody response in convalescent serum can temporarily link symptoms with a recent infection. Neutralizing antibody detection require often difficult cell culture virus amplification. Antibody binding assays require proper antigen synthesis and positive control sera to set assay thresholds. High levels of viral genetic diversity within orphan viral groups, frequent co-infections, low or rare pathogenicity, and chronic virus shedding, can all complicate disease association studies. The limited availability of matched cases and controls sample sets from different age groups and geographic origins is a major block for estimating the pathogenic potential of recently characterized orphan viruses. Current limitations on the practical use of deep sequencing for viral diagnostics are listed.

Thirty Years of Orphan Drug Legislation and the Development of Drugs to Treat Rare Seizure Conditions: A Cross Sectional Analysis.

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Döring, Jan Henje; Lampert, Anette; Hoffmann, Georg F; Ries, Markus

2016-01-01

Epilepsy is a serious chronic health condition with a high morbidity impairing the life of patients and afflicted families. Many epileptic conditions, especially those affecting children, are rare disorders generating an urgent medical need for more efficacious therapy options. Therefore, we assessed the output of the US and European orphan drug legislations. Quantitative analysis of the FDA and EMA databases for orphan drug designations according to STrengthening the Reporting of OBservational studies in Epidemiology (STROBE) criteria. Within the US Orphan Drug Act 40 designations were granted delivering nine approvals, i.e. clobazam, diazepam viscous solution for rectal administration, felbamate, fosphenytoin, lamotrigine, repository corticotropin, rufinamide, topiramate, and vigabatrin. Since 2000 the EMA granted six orphan drug designations whereof two compounds were approved, i.e. rufinamide and stiripentol. In the US, two orphan drug designations were withdrawn. Orphan drugs were approved for conditions including Lennox-Gastaut syndrome, infantile spasms, Dravet syndrome, and status epilepticus. Comparing time to approval for rufinamide, which was approved in the US and the EU to treat rare seizure conditions, the process seems faster in the EU (2.2 years) than in the US (4.3 years). Orphan drug development in the US and in the EU delivered only few molecular entities to treat rare seizure disorders. The development programs focused on already approved antiepileptic drugs or alternative pharmaceutical formulations. Most orphan drugs approved in the US are not approved in the EU to treat rare seizures although some were introduced after 2000 when the EU adopted the Orphan Drug Regulation.

Orphan drugs assessment in the centralised procedure.

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Nisticò, Giuseppe

2011-01-01

On the basis of the author's experience as member of the Committee for Medicinal Products for Human Use (CHMP) of the European Medicines Agency (EMA) and in order to facilitate the access of new orphan drugs to the patients, some suggestions were given. Among these the following should be taken into account by the regulatory bodies: 1) conditional approval or approval under exceptional circumstances should be granted more frequently; 2) the opinion of international societies for rare diseases should be taken into greater account by the EMA Committees; 3) the guidelines requirements should be interpreted more flexibly; 4) in comparison to the fulfilment of primary and secondary endpoints, the improvement of the quality of life should justify the approval of a new orphan drug; 5) the rigidity of guideline requirements should not prevail over the unmet medical need for severe and lethal rare disorders; 6) the statistical values of clinical data to the limit of significance should not prevail over the opinion of patients' associations and international scientific societies; 7) the current legislation should be amended.

National campaign for the search and recovery of Orphan radioactive sources

International Nuclear Information System (INIS)

Carboneras, Pedro; Ortiz, Maria T.; Correa, Cristina; Rueda, Carmen

2008-01-01

This paper aims to describe the main initial approaches of the campaign for the 'Recovery of Orphan Radioactive Sources' undertaken in Spain, in addition to the steps taken, the experience gained and the partial results obtained. The campaign began on 19th February 2007 and this paper reports the findings until 31st December 2007. The paper aims to share the experience gained with others who are considering or are already involved in similar campaigns and to enable opinions to be exchanged with those responsible for such campaigns in other countries. The campaign was initiated by the Spanish Ministry of Industry, Tourism and Trade with the expert assistance of the Nuclear Security Council. The initiative came about as a result of national legislation currently in force regarding the control of highly active and orphan radioactive source, which implements a European Directive. The campaign was commissioned to ENRESA (the Spanish National Company for Radioactive Waste Management) and the work, which began in 2007, will continue into 2008. The campaign aims to seek and recover the largest possible number of orphan radioactive sources (an Orphan radioactive source is understood to be one which is detected outside the standard control system and which, when detected, has an activity level higher than the exemption levels established in national and European regulations), and involves the collaboration of various different agents and organisations where such sources are or may be found. Finally, the paper provides details regarding the number and radiological characteristics of the sources which have already been recovered in Spain during the 2007 campaign. (author)

Sustainability of a Primary Care-Driven eConsult Service.

Science.gov (United States)

Liddy, Clare; Moroz, Isabella; Afkham, Amir; Keely, Erin

2018-03-01

Excessive wait times for specialist appointments pose a serious barrier to patient care. To improve access to specialist care and reduce wait times, we launched the Champlain BASE (Building Access to Specialists through eConsultation) eConsult service in April 2011. The objective of this study is to report on the impact of our multiple specialty eConsult service during the first 5 years of use after implementation, with a focus on growth and sustainability. We conducted a cross-sectional study of all eConsult cases submitted between April 1, 2011 and April 30, 2016, and measured impact with system utilization data and mandatory close-out surveys completed at the end of each eConsult. Impact indicators included time interval to obtain specialist advice, effect of specialist advice on the primary care clinician's course of action, and rate of avoidance of face-to-face visits. A total of 14,105 eConsult cases were directed to 56 different medical specialty groups, completed with a median response time of 21 hours, and 65% of all eConsults were resolved without a specialist visit. We observed rapid growth in the use of eConsult during the study period: 5 years after implementation the system was in use by 1,020 primary care clinicians, with more than 700 consultations taking place per month. This study presents the first in-depth look at the growth and sustainability of the multispecialty eConsult service. The results show the positive impact of an eConsult service and can inform other regions interested in implementing similar systems. © 2018 Annals of Family Medicine, Inc.

Empowering caregivers of orphans and vulnerable children in ...

African Journals Online (AJOL)

A comparison of orphan data between 2010 and 2014 shows a slight ... The training included the use of mobile technology to report weekly ... health, psychosocial support, protection, education, and ... Data were collected on members' demographic, socio-economic status, ... mobile technology platform for data collection.

A review and update on orphan drugs for the treatment of noninfectious uveitis

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You, Caiyun; Sahawneh, Haitham F; Ma, Lina; Kubaisi, Buraa; Schmidt, Alexander; Foster, C Stephen

2017-01-01

Introduction Uveitis, a leading cause of preventable blindness around the world, is a critically underserved disease in regard to the medications approved for use. Multiple immunomodulatory therapy (IMT) drugs are appropriate for uveitis therapy but are still off-label. These IMT agents, including antimetabolites, calcineurin inhibitors, alkylating agents, and biologic agents, have been designated as “orphan drugs” and are widely used for systemic autoimmune diseases or organ transplantation. Area covered The purpose of this paper is to comprehensively review and summarize the approved orphan drugs and biologics that are being used to treat systemic diseases and to discuss drugs that have not yet received approval as an “orphan drug for treating uveitis” by the US Food and Drug Administration (FDA). Our perspective IMT, as a steroid-sparing agent for uveitis patients, has shown promising clinical results. Refractory and recurrent uveitis requires combination IMT agents. IMT is continued for a period of 2 years while the patient is in remission before considering tapering medication. Our current goals include developing further assessments regarding the efficacy, optimal dose, and safety in efforts to achieve FDA approval for “on-label” use of current IMT agents and biologics more quickly and to facilitate insurance coverage and expand access to the products for this orphan disease. PMID:28203051

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

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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.

Carers' perceptions of the impact of home telehealth monitoring on the provision of care and sustainability of use.

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Wade, Rachael; Cartwright, Colleen; Shaw, Kelly

2015-06-01

This paper aims to report carers' perceptions of the impact of home telehealth on the provision of care and the sustainability of home telehealth use. This paper is reporting on a sample of 15 carers who were involved in the telehealth arm of a larger controlled trial. Carers primarily believed that telehealth helped to provide better care. None of the carers had organised, or planned to organise, ongoing telehealth monitoring beyond the study. The main reason given for non-sustained usage was the belief that the person they cared for no longer required, or would benefit from, the monitoring. As the person being cared for was a frail older person with multiple chronic diseases and a history of recent hospitalisation, the non-sustained usage of home telehealth by carers raises questions about what is needed to ensure sustainability of use; this requires further investigation. © 2014 AJA Inc.

Systems, strategies, and interventions for sustainable long-term care and protection of children with a history of living outside of family care.

Science.gov (United States)

Fluke, John D; Goldman, Philip S; Shriberg, Janet; Hillis, Susan D; Yun, Katherine; Allison, Susannah; Light, Enid

2012-10-01

This article reviews the available evidence regarding the efficacy, effectiveness, ethics, and sustainability of approaches to strengthen systems to care for and protect children living outside family care in low- and middle-income countries. For trafficked children, children of and on the street, children of conflict/disaster, and institutionalized children, a systems framework approach was used to organize the topic of sustainable approaches in low- and middle-income countries and addresses the following: legislation, policies, and regulations; system structures and functions (formal and informal); and continuum of care and services. The article draws on the findings of a focal group convened by the U.S. Government Evidence Summit: Protecting Children Outside of Family Care (December 12-13, 2011, Washington, DC), tasked with reviewing the literature on systems, strategies, and interventions for sustainable long-term care and protection of children with a history of living outside of family care in low- and middle-income country contexts. The specific methodology for the review is described in the commentary paper (Higgs, Zlidar, & Balster, 2012) that accompanies these papers. For the most part, the evidence base in support of sustainable long-term care for the populations of interest is relatively weak, with some stronger but unreplicated studies. Some populations have been studied more thoroughly than others, and there are many gaps. Most of the existing studies identify population characteristics, needs, and consequences of a lack of systemic services to promote family-like care. There is some evidence of the effectiveness of laws and policies, as well as some evidence of service effectiveness, in improving outcomes for children outside of family care. Despite the weaknesses and gaps of the existing research, there is a foundation of research for going forward, which should focus on developing and implementing systems for these most vulnerable children. The

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.

The psychological well-being of children orphaned by AIDS in Cape Town, South Africa

Directory of Open Access Journals (Sweden)

Cluver Lucie

2006-07-01

Full Text Available Abstract Background An estimated 2 million children are parentally bereaved by AIDS in South Africa. Little is known about mental health outcomes for this group. Methods This study aimed to investigate mental health outcomes for urban children living in deprived settlements in Cape Town. 30 orphaned children and 30 matched controls were compared using standardised questionnaires (SDQ on emotional and behavioural problems, peer and attention difficulties, and prosocial behaviour. The orphan group completed a modified version of a standardised questionnaire (IES-8, measuring Post-Traumatic Stress symptoms. Group differences were tested using t-tests and Pearson's chi-square. Results Both groups scored highly for peer problems, emotional problems and total scores. However, orphans were more likely to view themselves as having no good friends (p = .002, to have marked concentration difficulties (p = .03, and to report frequent somatic symptoms (p = .05, but were less likely to display anger through loss of temper (p = .03. Orphans were more likely to have constant nightmares (p = .01, and 73% scored above the cut-off for Post-Traumatic Stress Disorder. Conclusion Findings suggest important areas for larger-scale research for parentally-bereaved children.

Characterization of radioactive orphan sources by gamma spectrometry

International Nuclear Information System (INIS)

Cruz W, H.

2013-01-01

The sealed radioactive sources are widely applicable in industry. They must have a permanent control and must be registered with the Technical Office of the National Authority (OTAN). However, at times it has identified the presence of abandoned sealed sources unknown to the owner. These sources are called 'orphan sources'. Of course these sources represent a high potential risk because accidents can trigger dire consequences depending on your activity and chemical form in which it presents the radioisotope. This paper describes the process and the actions taken to characterize two orphan radioactive sources from the smelter a Aceros Arequipa. For characterization we used a gamma spectrometry system using a detector NaI(Tl) 3″ x 3″ with a multichannel analyzer Nucleus PCA-II. The radioisotope identified was cesium - 137 ( 137 Cs) in both cases. Fortunately, the sources maintained their integrity would otherwise have generated significant pollution considering the chemical form of the radioisotope and easy dispersion. (author)

Evolution and dynamics of orphan penumbrae in the solar photosphere: Analysis from multi-instrument observations

International Nuclear Information System (INIS)

Zuccarello, Francesca; Guglielmino, Salvo L.; Romano, Paolo

2014-01-01

We investigate the dynamics and magnetic properties of orphan penumbrae observed in the solar photosphere to understand the formation process of such structures. We observed two orphan penumbrae in active region NOAA 11089 during a coordinated observing campaign carried out in 2010 July, involving the Hinode/Solar Optical Telescope (SOT) and Dutch Open Telescope (DOT), benefiting also from continuous observations acquired by the SDO satellite. We follow their evolution during about three days. The two structures form in different ways: one seems to break off the penumbra of a nearby sunspot, the other is formed through the emergence of new flux. Then they fragment while evolving. The SDO Helioseismic and Magnetic Imager measurements indicate the presence of strong line-of-sight motions in the regions occupied by these orphan penumbrae, lasting for several hours and decreasing with time. This is confirmed by SOT spectro-polarimetric measurements of the Fe I 630.2 nm pair. The latter also show that Stokes parameters exhibit significant asymmetries in the orphan penumbral regions, typical of an uncombed filamentary structure. The orphan penumbrae lie above polarity inversion lines, where peculiar plasma motions take place with velocities larger than ±3 km s –1 . The vector magnetic field in these regions is highly inclined, with the average magnetic field strength decreasing with time. The DOT observations in the Hα line and SDO Atmospheric Imaging Assembly measurements in the He II 30.4 nm line indicate that there is no counterpart for the orphan penumbrae at midchromospheric heights or above. Our findings suggest that in at least one of the features investigated the emerging flux may be trapped in the low atmospheric layers by the overlying pre-existing fields, forming these filamentary structures.

Evolution and dynamics of orphan penumbrae in the solar photosphere: Analysis from multi-instrument observations

Energy Technology Data Exchange (ETDEWEB)

Zuccarello, Francesca [Dipartimento di Fisica e Astronomia, Università di Catania, Via S. Sofia 78, I-95123 Catania (Italy); Guglielmino, Salvo L.; Romano, Paolo, E-mail: fzu@oact.inaf.it [INAF-Osservatorio Astrofisico di Catania, Via S. Sofia 78, I-95123 Catania (Italy)

2014-05-20

We investigate the dynamics and magnetic properties of orphan penumbrae observed in the solar photosphere to understand the formation process of such structures. We observed two orphan penumbrae in active region NOAA 11089 during a coordinated observing campaign carried out in 2010 July, involving the Hinode/Solar Optical Telescope (SOT) and Dutch Open Telescope (DOT), benefiting also from continuous observations acquired by the SDO satellite. We follow their evolution during about three days. The two structures form in different ways: one seems to break off the penumbra of a nearby sunspot, the other is formed through the emergence of new flux. Then they fragment while evolving. The SDO Helioseismic and Magnetic Imager measurements indicate the presence of strong line-of-sight motions in the regions occupied by these orphan penumbrae, lasting for several hours and decreasing with time. This is confirmed by SOT spectro-polarimetric measurements of the Fe I 630.2 nm pair. The latter also show that Stokes parameters exhibit significant asymmetries in the orphan penumbral regions, typical of an uncombed filamentary structure. The orphan penumbrae lie above polarity inversion lines, where peculiar plasma motions take place with velocities larger than ±3 km s{sup –1}. The vector magnetic field in these regions is highly inclined, with the average magnetic field strength decreasing with time. The DOT observations in the Hα line and SDO Atmospheric Imaging Assembly measurements in the He II 30.4 nm line indicate that there is no counterpart for the orphan penumbrae at midchromospheric heights or above. Our findings suggest that in at least one of the features investigated the emerging flux may be trapped in the low atmospheric layers by the overlying pre-existing fields, forming these filamentary structures.

Evolution and Dynamics of Orphan Penumbrae in the Solar Photosphere: Analysis from Multi-instrument Observations

Science.gov (United States)

Zuccarello, Francesca; Guglielmino, Salvo L.; Romano, Paolo

2014-05-01

We investigate the dynamics and magnetic properties of orphan penumbrae observed in the solar photosphere to understand the formation process of such structures. We observed two orphan penumbrae in active region NOAA 11089 during a coordinated observing campaign carried out in 2010 July, involving the Hinode/Solar Optical Telescope (SOT) and Dutch Open Telescope (DOT), benefiting also from continuous observations acquired by the SDO satellite. We follow their evolution during about three days. The two structures form in different ways: one seems to break off the penumbra of a nearby sunspot, the other is formed through the emergence of new flux. Then they fragment while evolving. The SDO Helioseismic and Magnetic Imager measurements indicate the presence of strong line-of-sight motions in the regions occupied by these orphan penumbrae, lasting for several hours and decreasing with time. This is confirmed by SOT spectro-polarimetric measurements of the Fe I 630.2 nm pair. The latter also show that Stokes parameters exhibit significant asymmetries in the orphan penumbral regions, typical of an uncombed filamentary structure. The orphan penumbrae lie above polarity inversion lines, where peculiar plasma motions take place with velocities larger than ±3 km s-1. The vector magnetic field in these regions is highly inclined, with the average magnetic field strength decreasing with time. The DOT observations in the Hα line and SDO Atmospheric Imaging Assembly measurements in the He II 30.4 nm line indicate that there is no counterpart for the orphan penumbrae at midchromospheric heights or above. Our findings suggest that in at least one of the features investigated the emerging flux may be trapped in the low atmospheric layers by the overlying pre-existing fields, forming these filamentary structures.

Societal Preferences for Funding Orphan Drugs in the United Kingdom: An Application of Person Trade-Off and Discrete Choice Experiment Methods.

Science.gov (United States)

Bourke, Siobhan M; Plumpton, Catrin O; Hughes, Dyfrig A

2018-05-01

It is unclear whether UK National Health Service (NHS) policies for orphan drugs, which permit funding of non-cost-effective treatments, reflect societal preferences. We conducted person trade-off (PTO) and discrete choice experiment (DCE) among 3950 adults selected to be representative of the UK general population. Experimental design was informed by surveys of patients affected by rare diseases, their caregivers, health care staff, and policymakers. Societal preferences were estimated in relation to treating a common disease, increases in waiting lists, or filling of vacant NHS posts. Results of the DCE were applied to recently licensed orphan drugs. On the basis of equal cost, the majority of respondents to the PTO (54%; 95% confidence interval [CI] 50-59) chose to allocate funds equally between patients treated for rare diseases and those treated for common diseases, with 32% (95% CI 28-36) favoring treating rare diseases over treating common diseases (14%; 95% CI 11-17), which this reduced to 23% (95% CI 20-27) when rare disease treatments were 10 times more expensive. When framed differently, more respondents prioritized not increasing waiting list size (43%; 95% CI 39-48) than to treat rare disease patients (34%; 95% CI 30-38). The DCE indicated a greater preference for treating a common disease over a rare disease. Respondents agreed with five of 12 positive appraisal recommendations for orphan drugs, even if their list price was higher, but preferred the NHS not to fund the remainder. The general public does not value rarity as a sufficient reason to justify special consideration for additional NHS funding of orphan drugs. This has implications regarding the appropriateness of operating higher thresholds of cost-effectiveness. Copyright © 2018 International Society for Pharmacoeconomics and Outcomes Research (ISPOR). Published by Elsevier Inc. All rights reserved.

A roadmap for breeding orphan leafy vegetable species: a case study of Gynandropsis gynandra (Cleomaceae).

Science.gov (United States)

Sogbohossou, E O Deedi; Achigan-Dako, Enoch G; Maundu, Patrick; Solberg, Svein; Deguenon, Edgar M S; Mumm, Rita H; Hale, Iago; Van Deynze, Allen; Schranz, M Eric

2018-01-01

Despite an increasing awareness of the potential of "orphan" or unimproved crops to contribute to food security and enhanced livelihoods for farmers, coordinated research agendas to facilitate production and use of orphan crops by local communities are generally lacking. We provide an overview of the current knowledge on leafy vegetables with a focus on Gynandropsis gynandra , a highly nutritious species used in Africa and Asia, and highlight general and species-specific guidelines for participatory, genomics-assisted breeding of orphan crops. Key steps in genome-enabled orphan leafy vegetables improvement are identified and discussed in the context of Gynandropsis gynandra breeding, including: (1) germplasm collection and management; (2) product target definition and refinement; (3) characterization of the genetic control of key traits; (4) design of the 'process' for cultivar development; (5) integration of genomic data to optimize that 'process'; (6) multi-environmental participatory testing and end-user evaluation; and (7) crop value chain development. The review discusses each step in detail, with emphasis on improving leaf yield, phytonutrient content, organoleptic quality, resistance to biotic and abiotic stresses and post-harvest management.

Challenges in the clinical development of orphan drugs

NARCIS (Netherlands)

Kreeftmeijer-Vegter, A.R.

2015-01-01

Rare diseases are characterised by a low prevalence. There are so many different rare diseases, that millions of people are affected.The vast majority of these diseases suffer from a lack of approved treatment options and orphan drugs (ODs) therefore represent a huge unmet medical need. ODs face

A review and update on orphan drugs for the treatment of noninfectious uveitis

Directory of Open Access Journals (Sweden)

You C

2017-01-01

Full Text Available Caiyun You,1–3 Haitham F Sahawneh,1,2 Lina Ma,1,2 Buraa Kubaisi,1,2 Alexander Schmidt,1,2 C Stephen Foster1,2,4 1Massachusetts Eye Research and Surgery Institution (MERSI, Waltham, 2Ocular Immunology and Uveitis Foundation, Weston, MA, USA; 3Department of Ophthalmology, Tianjin Medical University General Hospital, Tianjin, People’s Republic of China; 4Harvard Medical School, Boston, MA, USA Introduction: Uveitis, a leading cause of preventable blindness around the world, is a critically underserved disease in regard to the medications approved for use. Multiple immunomodulatory therapy (IMT drugs are appropriate for uveitis therapy but are still off-label. These IMT agents, including antimetabolites, calcineurin inhibitors, alkylating agents, and biologic agents, have been designated as “orphan drugs” and are widely used for systemic autoimmune diseases or organ transplantation.Area covered: The purpose of this paper is to comprehensively review and summarize the approved orphan drugs and biologics that are being used to treat systemic diseases and to discuss drugs that have not yet received approval as an “orphan drug for treating uveitis” by the US Food and Drug Administration (FDA.Our perspective: IMT, as a steroid-sparing agent for uveitis patients, has shown promising clinical results. Refractory and recurrent uveitis requires combination IMT agents. IMT is continued for a period of 2 years while the patient is in remission before considering tapering medication. Our current goals include developing further assessments regarding the efficacy, optimal dose, and safety in efforts to achieve FDA approval for “on-label” use of current IMT agents and biologics more quickly and to facilitate insurance coverage and expand access to the products for this orphan disease. Keywords: immunomodulatory, orphan drug, steroid sparing, uveitis

76 FR 29183 - Exclusion of Orphan Drugs for Certain Covered Entities Under 340B Program

Science.gov (United States)

2011-05-20

... and, if they are, at what price. These covered entities do not know if they can buy these orphan drugs... DEPARTMENT OF HEALTH AND HUMAN SERVICES 42 CFR Part 10 RIN 0906-AA94 Exclusion of Orphan Drugs for... Prices of Drugs Purchased by Covered Entities.'' Section 340B implemented a drug pricing program by which...

Information ranks highest: Expectations of female adolescents with a rare genital malformation towards health care services.

Directory of Open Access Journals (Sweden)

Elisabeth Simoes

Full Text Available Access to highly specialized health care services and support to meet the patient's specific needs is critical for health outcome, especially during age-related transitions within the health care system such as with adolescents entering adult medicine. Being affected by an orphan disease complicates the situation in several important respects. Long distances to dedicated institutions and scarcity of knowledge, even among medical doctors, may present major obstacles for proper access to health care services and health chances. This study is part of the BMBF funded TransCareO project examining in a mixed-method design health care provisional deficits, preferences, and barriers in health care access as perceived by female adolescents affected by the Mayer-Rokitansky-Küster-Hauser syndrome (MRKHS, a rare (orphan genital malformation.Prior to a communicative validation workshop, critical elements of MRKHS related care and support (items were identified in interviews with MRKHS patients. During the subsequent workshop, 87 persons involved in health care and support for MRKHS were asked to rate the items using a 7-point Likert scale (7, strongly agree; 1, strongly disagree as to 1 the elements' potential importance (i.e., health care expected to be "best practice", or priority and 2 the presently experienced care. A gap score between the two was computed highlighting fields of action. Items were arranged into ten separate questionnaires representing domains of care and support (e.g., online-portal, patient participation. Within each domain, several items addressed various aspects of "information" and "access". Here, we present the outcome of items' evaluation by patients (attended, NPAT = 35; respondents, NRESP = 19.Highest priority scores occurred for domains "Online-Portal", "Patient participation", and "Tailored informational offers", characterizing them as extremely important for the perception as best practice. Highest gap scores yielded domains

Psychosocial attributes of orphaned youths in Ibadan Metropolis ...

African Journals Online (AJOL)

Methods: A total of 1850 youth from 20 schools in 3 urban and 2 rural school districts in South-western Nigeria had the self-administered instruments: Global School Health Questionnaire to assess reproductive and other health indices and the Culture Free Self Esteem Inventory. Results: The overall prevalence of orphans ...

“The Impact of Community-based Capital Cash Transfers on the Schooling of Orphaned and Vulnerable Children in Kenya”

DEFF Research Database (Denmark)

Skovdal, Morten; Webale, A.; Mwasiaji, W.

2013-01-01

In this article we report on a community-based capital cash transfer initiative (CCCT) in Kenya that sought to mobilise and enable HIV-affected communities to respond to the needs of orphaned and vulnerable children. With bilateral funding, the Social Services Department in Kenya provided 80 comm...... of orphaned children, particularly amongst girls. We conclude that CCCT is a viable strategy for improving orphan schooling in sub-Saharan Africa....

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

SCOPEOUT: sustainability and spread of quality improvement activities in long-term care- a mixed methods approach.

Science.gov (United States)

Cranley, Lisa A; Hoben, Matthias; Yeung, Jasper; Estabrooks, Carole A; Norton, Peter G; Wagg, Adrian

2018-03-12

Interventions to improve quality of care for residents of long-term care facilities, and to examine the sustainability and spread of such initiatives, remain a top research priority. The purpose of this exploratory study was to assess the extent to which activities initiated in a quality improvement (QI) collaborative study using care aide led teams were sustained or spread following cessation of the initial project and to identify factors that led to its success. This study used an exploratory mixed methods study design and was conducted in seven residential long-term care facilities in two Canadian provinces. Sustainability and spread of QI activities were assessed by a questionnaire over five time points for 18 months following the collaborative study with staff from both intervention with non-intervention units. Semi-structured interviews were conducted with care managers at six and 12 months. QI team success in applying the QI model was ranked as high, medium, or low using criteria developed by the research team. Descriptive statistics, bivariate analyses, and General Estimating Equations were used to analyze the data. Interview data were analyzed using thematic analysis. In total, 683 surveys were received over the five time periods from 476 unique individuals on a facility unit. Seven managers were interviewed. A total of 533 surveys were analyzed. While both intervention and non-intervention units experienced a decline over time in all outcome measures, this decline was significantly less pronounced on intervention units. Facilities with medium and high success ranking had significantly higher scores in all four outcomes than facilities with a low success ranking. Care aides reported significantly less involvement of others in QI activities, less empowerment and less satisfaction with the quality of their work life than regulated care providers. Manager interviews provided evidence of sustainability of QI activities on the intervention units in four of

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 (p<0.05) were identified between the variables gender, nursing 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.

"Orphan" retrogenes in the human genome.

Science.gov (United States)

Ciomborowska, Joanna; Rosikiewicz, Wojciech; Szklarczyk, Damian; Makałowski, Wojciech; Makałowska, Izabela

2013-02-01

Gene duplicates generated via retroposition were long thought to be pseudogenized and consequently decayed. However, a significant number of these genes escaped their evolutionary destiny and evolved into functional genes. Despite multiple studies, the number of functional retrogenes in human and other genomes remains unclear. We performed a comparative analysis of human, chicken, and worm genomes to identify "orphan" retrogenes, that is, retrogenes that have replaced their progenitors. We located 25 such candidates in the human genome. All of these genes were previously known, and the majority has been intensively studied. Despite this, they have never been recognized as retrogenes. Analysis revealed that the phenomenon of replacing parental genes with their retrocopies has been taking place over the entire span of animal evolution. This process was often species specific and contributed to interspecies differences. Surprisingly, these retrogenes, which should evolve in a more relaxed mode, are subject to a very strong purifying selection, which is, on average, two and a half times stronger than other human genes. Also, for retrogenes, they do not show a typical overall tendency for a testis-specific expression. Notably, seven of them are associated with human diseases. Recognizing them as "orphan" retrocopies, which have different regulatory machinery than their parents, is important for any disease studies in model organisms, especially when discoveries made in one species are transferred to humans.

The new orphaned radioactive sources program in the United States

International Nuclear Information System (INIS)

Naraine, N.; Karhnak, J.M.

1998-01-01

Exposure of the public to uncontrolled radioactive sources has become an significant concern to the United States (US) Government because of the continuous increase in the number of sources that are being found, sometimes without proper radiation markings. This problem is primarily due to inadequate control, insufficient accountability, and improper disposal of radioactive materials. The US Environmental Protection Agency (EPA) has funded a cooperative 'orphaned' source initiative with the Conference of Radiation Control Program Directors (CRCPD) to bring under control unwanted sources and thus reduce the potential for unnecessary exposure to the public, workers and the environment. The program is being developed through the cooperative efforts of government agencies and industry, and will provide a quick and efficient method to bring orphaned sources under control and out of potentially dangerous situations. (author)

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.

A framework and a measurement instrument for sustainability of work practices in long-term care

NARCIS (Netherlands)

S.S. Slaghuis (Sarah); M.M.H. Strating (Mathilde); R.A. Bal (Roland); A.P. Nieboer (Anna)

2011-01-01

textabstractBackground: In health care, many organizations are working on quality improvement and/or innovation of their care practices. Although the effectiveness of improvement processes has been studied extensively, little attention has been given to sustainability of the changed work practices

Ror receptor tyrosine kinases: orphans no more

OpenAIRE

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

2008-01-01

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 act...

Do orphan G-protein-coupled receptors have ligand-independent functions? New insights from receptor heterodimers

OpenAIRE

Levoye, Angélique; Dam, Julie; Ayoub, Mohammed A; Guillaume, Jean-Luc; Jockers, Ralf

2006-01-01

G-protein-coupled receptors (GPCRs) are important drug targets and are involved in virtually every biological process. However, there are still more than 140 orphan GPCRs, and deciphering their function remains a priority for fundamental and clinical research. Research on orphan GPCRs has concentrated mainly on the identification of their natural ligands, whereas recent data suggest additional ligand-independent functions for these receptors. This emerging concept is connected with the observ...

Who wants to adopt and who wants to be adopted: a sample of American families and sub-Saharan African orphans.

Science.gov (United States)

Balding, Christopher; Feng, Yan; Atashband, Armita

2015-12-01

The debate between pro- and anti-international adoption advocates relies heavily on rhetoric and little on data analysis. To better understand the state of orphans and potential adopters in this debate, we utilize the National Survey of Family Growth (NSFG) and the Demographic and Health Surveys (DHS) to study who adopts internationally and the status of orphaned children in sub-Saharan Africa. According to NSFG data adopters are church going, highly educated, stable families aware of the challenges faced by international adoption, with high rates of infertility and rates of child abuse half the population average. According to the DHS data, orphans in sub-Saharan Africa suffer from significantly higher deprivation, reduced schooling and increased levels of stunting and underweight reported than their cohort. Using this data, we estimate conservatively that that 1 50 000 orphans from our sample of sub-Saharan African countries died from their 5-year birth cohort. Given the large number of families seeking to adopt and the high number of orphan deaths, it seems counterproductive to restrict international adoptions given the significantly lower risks faced by children in adopted families compared with remaining orphaned. © The Author 2015; all rights reserved. Published by Oxford University Press in association with The London School of Hygiene and Tropical Medicine.

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

A framework and a measurement instrument for sustainability of work practices in long-term care

Directory of Open Access Journals (Sweden)

Slaghuis Sarah S

2011-11-01

Full Text Available Abstract Background In health care, many organizations are working on quality improvement and/or innovation of their care practices. Although the effectiveness of improvement processes has been studied extensively, little attention has been given to sustainability of the changed work practices after implementation. The objective of this study is to develop a theoretical framework and measurement instrument for sustainability. To this end sustainability is conceptualized with two dimensions: routinization and institutionalization. Methods The exploratory methodological design consisted of three phases: a framework development; b instrument development; and c field testing in former improvement teams in a quality improvement program for health care (N teams = 63, N individual = 112. Data were collected not until at least one year had passed after implementation. Underlying constructs and their interrelations were explored using Structural Equation Modeling and Principal Component Analyses. Internal consistency was computed with Cronbach's alpha coefficient. A long and a short version of the instrument are proposed. Results The χ2- difference test of the -2 Log Likelihood estimates demonstrated that the hierarchical two factor model with routinization and institutionalization as separate constructs showed a better fit than the one factor model (p Conclusions The theoretical framework offers a valuable starting point for the analysis of sustainability on the level of actual changed work practices. Even though the two dimensions routinization and institutionalization are related, they are clearly distinguishable and each has distinct value in the discussion of sustainability. Finally, the subscales conformed to psychometric properties defined in literature. The instrument can be used in the evaluation of improvement projects.

Challenges in orphan drug development and regulatory policy in China.

Science.gov (United States)

Cheng, Alice; Xie, Zhi

2017-01-18

While regulatory policy is well defined for orphan drug development in the United States and Europe, rare disease policy in China is still evolving. Many Chinese patients currently pay out of pocket for international treatments that are not yet approved in China. The lack of a clear definition and therefore regulatory approval process for rare diseases has, until now, de-incentivized pharmaceutical companies to pursue rare disease drug development in China. In turn, many grassroots movements have begun to support rare disease patients and facilitate drug discovery through research. Recently, the Chinese FDA set new regulatory guidelines for drugs being developed in China, including an expedited review process for life-saving treatments. In this review, we discuss the effects of these new policy changes on and suggest potential solutions to innovate orphan drug development in China.

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

Increasing human Th17 differentiation through activation of orphan nuclear receptor retinoid acid-related orphan receptor γ (RORγ) by a class of aryl amide compounds.

Science.gov (United States)

Zhang, Wei; Zhang, Jing; Fang, Leiping; Zhou, Ling; Wang, Shuai; Xiang, Zhijun; Li, Yuan; Wisely, Bruce; Zhang, Guifeng; An, Gang; Wang, Yonghui; Leung, Stewart; Zhong, Zhong

2012-10-01

In a screen for small-molecule inhibitors of retinoid acid-related orphan receptor γ (RORγ), we fortuitously discovered that a class of aryl amide compounds behaved as functional activators of the interleukin 17 (IL-17) reporter in Jurkat cells. Three of these compounds were selected for further analysis and found to activate the IL-17 reporter with potencies of ∼0.1 μM measured by EC₅₀. These compounds were shown to directly bind to RORγ by circular dichroism-based thermal stability experiments. Furthermore, they can enhance an in vitro Th17 differentiation process in human primary T cells. As RORγ remains an orphan nuclear receptor, discovery of these aryl amide compounds as functional agonists will now provide pharmacological tools for us to dissect functions of RORγ and facilitate drug discovery efforts for immune-modulating therapies.

Investigating the sustainability of careers in academic primary care: a UK survey.

Science.gov (United States)

Calitri, Raff; Adams, Ann; Atherton, Helen; Reeve, Joanne; Hill, Nathan R

2014-12-14

The UK National Health Service (NHS) is undergoing institutional reorganisation due to the Health and Social Care Act-2012 with a continued restriction on funding within the NHS and clinically focused academic institutions. The UK Society for Academic Primary Care (SAPC) is examining the sustainability of academic primary care careers within this climate and preliminary qualitative work has highlighted individual and organisational barriers. This study seeks to quantify the current situation for academics within primary care. A survey of academic primary care staff was undertaken. Fifty-three academic primary care departments were selected. Members were invited to complete a survey which contained questions about an individual's career, clarity of career pathways, organisational culture, and general experience of working within the area. Data were analysed descriptively with cross-tabulations between survey responses and career position (early, mid-level, senior), disciplinary background (medical, scientist), and gender. Pearson chi-square test was used to determine likelihood that any observed difference between the sets arose by chance. Responses were received from 217 people. Career pathways were unclear for the majority of people (64%) and 43% of the workforce felt that the next step in their career was unclear. This was higher in women (52% vs. men 25%; χ(2)(3) = 14.76; p = 0.002) and higher in those in early career (50% vs. senior career, 25%) and mid-career(45%; vs. senior career; χ(2)(6) = 29.19, p cultural experiences. Sustainability of a academic primary care career is undermined by unclear pathways and a lack of promotion. If the discipline is to thrive, there is a need to support early and mid-career individuals via greater transparency of career pathways. Despite these findings staff remained positive about their careers.

Understanding the dynamics of sustainable change: A 20-year case study of integrated health and social care.

Science.gov (United States)

Klinga, Charlotte; Hasson, Henna; Andreen Sachs, Magna; Hansson, Johan

2018-06-04

Change initiatives face many challenges, and only a few lead to long-term sustainability. One area in which the challenge of achieving long-term sustainability is particularly noticeable is integrated health and social care. Service integration is crucial for a wide range of patients including people with complex mental health and social care needs. However, previous research has focused on the initiation, resistance and implementation of change, while longitudinal studies remain sparse. The objective of this study was therefore to gain insight into the dynamics of sustainable changes in integrated health and social care through an analysis of local actions that were triggered by a national policy. A retrospective and qualitative case-study research design was used, and data from the model organisation's steering-committee minutes covering 1995-2015 were gathered and analysed. The analysis generated a narrative case description, which was mirrored to the key elements of the Dynamic Sustainability Framework (DSF). The development of inter-sectoral cooperation was characterized by a participatory approach in which a shared structure was created to support cooperation and on-going quality improvement and learning based on the needs of the service user. A key management principle was cooperation, not only on all organisational levels, but also with service users, stakeholder associations and other partner organisations. It was shown that all these parts were interrelated and collectively contributed to the creation of a structure and a culture which supported the development of a dynamic sustainable health and social care. This study provides valuable insights into the dynamics of organizational sustainability and understanding of key managerial actions taken to establish, develop and support integration of health and social care for people with complex mental health needs. The service user involvement and regular reviews of service users' needs were essential in order

Review of regulatory recommendations for orphan drug submissions in the Netherlands and Scotland : focus on the underlying pharmacoeconomic evaluations

NARCIS (Netherlands)

Vegter, Stefan; Rozenbaum, Mark H.; Postema, Roelien; Tolley, Keith; Postma, Maarten J.

2010-01-01

Background: Pharmacoeconomic evaluations of new drug therapies are often required for reimbursement or guidance decisions. However, for orphan drugs, country-specific requirements exist. In the Netherlands, orphan drug developers can be exempted from providing a full pharmacoeconomic evaluation,

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

Science.gov (United States)

Brach, Cindy; Anglin, Grace; Devers, Kelly J.; Burton, Rachel

2018-01-01

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. PMID:29119478

Neuro-psychopharmacological perspective of Orphan receptors of Rhodopsin (class A) family of G protein-coupled receptors.

Science.gov (United States)

Khan, Muhammad Zahid; He, Ling

2017-04-01

In the central nervous system (CNS), G protein-coupled receptors (GPCRs) are the most fruitful targets for neuropsychopharmacological drug development. Rhodopsin (class A) is the most studied class of GPCR and includes orphan receptors for which the endogenous ligand is not known or is unclear. Characterization of orphan GPCRs has proven to be challenging, and the production pace of GPCR-based drugs has been incredibly slow. Determination of the functions of these receptors may provide unexpected insight into physiological and neuropathological processes. Advances in various methods and techniques to investigate orphan receptors including in situ hybridization and knockdown/knockout (KD/KO) showed extensive expression of these receptors in the mammalian brain and unmasked their physiological and neuropathological roles. Due to these rapid progress and development, orphan GPCRs are rising as a new and promising class of drug targets for neurodegenerative diseases and psychiatric disorders. This review presents a neuropsychopharmacological perspective of 26 orphan receptors of rhodopsin (class A) family, namely GPR3, GPR6, GPR12, GPR17, GPR26, GPR35, GPR39, GPR48, GPR49, GPR50, GPR52, GPR55, GPR61, GPR62, GPR63, GPR68, GPR75, GPR78, GPR83, GPR84, GPR85, GPR88, GPR153, GPR162, GPR171, and TAAR6. We discussed the expression of these receptors in mammalian brain and their physiological roles. Furthermore, we have briefly highlighted their roles in neurodegenerative diseases and psychiatric disorders including Alzheimer's disease, Parkinson's disease, neuroinflammation, inflammatory pain, bipolar and schizophrenic disorders, epilepsy, anxiety, and depression.

Conceptions of mental health among Ugandan youth orphaned by ...

African Journals Online (AJOL)

Poor mental health was perceived as a form of madness or insanity and it was associated with a loss of basic life necessities, such as access to food, education or shelter. The youths also identified factors that promote more successful orphans. The findings of this study suggest that Western terminologies and symptom ...

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.

The life experiences of AIDS orphans in Malawi : a case of Area 23, Kalolo and Tsabango village in Lilongwe district

OpenAIRE

Chisala, Gloria Lucy

2005-01-01

Mastergradsoppgave i "Comparative social work" - Høgskolen i Bodø, 2005 This thesis reports on qualitative life history interviews of orphaned children who have lost both of their parents due to death by HIV/AIDS in Malawi. The focus is on double orphans who are between the ages of 15 and 17 years. The purpose is to explore and analyse the life experiences of orphans in Lilongwe in order to understand how they construct their social world. Methodologically, the study uses b...

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.

Children of a lesser god? Orphans, Vulnerable Children (OVCs) and ...

African Journals Online (AJOL)

Orphans, Vulnerable Children (OVCs) and poverty in Zambia: implications for social work practice. ... This paper attempts to present a conceptual linkage between a model of intervention of social protection and community practice model specifically locality development in terms of planning, organizing, decision making, ...

Clinical evidence for orphan medicinal products-a cause for concern?

NARCIS (Netherlands)

Picavet, Eline; Cassiman, David; Hollak, Carla E.; Maertens, Johan A.; Simoens, Steven

2013-01-01

The difficulties associated with organising clinical studies for orphan medicinal products (OMPs) are plentiful. Recent debate on the long-term effectiveness of some OMPs, led us to question whether the initial standards for clinical evidence for OMPs, set by the European Medicines Agency (EMA) at

Emotional well-being of orphans and vulnerable children in Ogun ...

African Journals Online (AJOL)

Previous research has found strong links between the emotional well-being of children and young people to their personal, social development and academic performance. This study examined stigmatisation, sexual involvement and school enrolment as predictors of emotional well-being of orphans and vulnerable ...

Orphan G protein receptor GPR55 as an emerging target in cancer therapy and management

Directory of Open Access Journals (Sweden)

Leyva-Illades D

2013-07-01

Full Text Available Dinorah Leyva-Illades,1–3 Sharon DeMorrow1–3 1Digestive Disease Research Center, Scott and White Hospital, Temple, TX, USA; 2Department of Internal MedicineTexas A&M Health Science Center, Temple, TX, USA; 3Research Service, Central Texas Veterans Health Care System, Temple, TX, USA Abstract: G protein-coupled receptors (GPCRs modulate a vast array of cellular processes. The current review gives an overview of the general characteristics of GPCRs and their role in physiological conditions. In addition, it describes the current knowledge of the physiological and pathophysiological functions of GPR55, an orphan GPCR, and how it can be exploited as a therapeutic target to combat various cancers. Keywords: GPR55, cancer, GPCR, endocannabinoids

The number of orphans in yeast and fly is drastically reduced by using combining searches in both proteomes and genomes

OpenAIRE

Basile, Walter; Elofsson, Arne

2017-01-01

The detection of orphans, i.e. genes without homologs in other species, is important as it provides a glimpse on the evolutionary processes that create novel genes. However, for an unbiased view of such de novo gene creation the detection of orphans needs to be accurate. The estimation of orphanicity, and in general the age determination of any gene, is dependent on two factors: (i) a method to detect homologs in a genome and (ii) a set of related genomes. Here, we set out to investigate how ...

Building a Sustainable Primary Care Workforce: Where Do We Go from Here?

Science.gov (United States)

Linzer, Mark; Poplau, Sara

2017-01-01

The article by Puffer et al in this month's JABFM confirms a high burnout rate (25%) among family physicians renewing their credentials, with a higher rate among young and female doctors. Recent reports confirm high burnout rates among general internists. Thus, mechanisms to monitor and improve worklife in primary care are urgently needed. We describe the Mini Z (for "zero burnout program") measure, designed for these purposes, and suggest interventions that might improve satisfaction and sustainability in primary care, including longer visits, clinician control of work schedules, scribe support for electronic medical record work, team-based care, and an explicit emphasis on work-home balance. © Copyright 2017 by the American Board of Family Medicine.

Working toward financial sustainability of integrated behavioral health services in a public health care system.

Science.gov (United States)

Monson, Samantha Pelican; Sheldon, J Christopher; Ivey, Laurie C; Kinman, Carissa R; Beacham, Abbie O

2012-06-01

The need, benefit, and desirability of behavioral health integration in primary care is generally accepted and has acquired widespread positive regard. However, in many health care settings the economics, business aspects, and financial sustainability of practice in integrated care settings remains an unsolved puzzle. Organizational administrators may be reluctant to expand behavioral health services without evidence that such programs offer clear financial benefits and financial sustainability. The tendency among mental health professionals is to consider positive clinical outcomes (e.g., reduced depression) as being globally valued indicators of program success. Although such outcomes may be highly valued by primary care providers and patients, administrative decision makers may require demonstration of more tangible financial outcomes. These differing views require program developers and evaluators to consider multiple outcome domains including clinical/psychological symptom reduction, potential cost benefit, and cost offset. The authors describe a process by which a pilot demonstration project is being implemented to demonstrate programmatic outcomes with a focus on the following: 1) clinician efficiency, 2) improved health outcomes, and 3) direct revenue generation associated with the inclusion of integrated primary care in a public health care system. The authors subsequently offer specific future directions and commentary regarding financial evaluation in each of these domains.

Effectiveness of the Group Play Therapy on the Insecure Attachment and Social Skills of Orphans in Ahvaz City

Science.gov (United States)

Mousavi, Bahareh; Safarzadeh, Sahar

2016-01-01

This study aimed to determine the effectiveness of the group play therapy on the insecure attachment and social skills of orphans in Ahvaz city. Statistical population included all orphans in Ahvaz city, of whom 30 students were selected whose scores in insecure attachment and in social skills were one standard deviation higher and one standard…

Aspects of dealing with orphan sources

International Nuclear Information System (INIS)

Lovjagina, Irina

2008-01-01

Full text: Since Latvia joined the European Union (EU) in 2004, State have to apply EURATOM Council Directives on 2003/122/EURATOM with provisions of IAEA Code of Conduct for the Safety and Security of Radioactive Sources to comply with the Directive before 31 December 2005, to harmonize controls within European Community Member States. It is mentioned, that State have to bring into a force the laws, regulations and administrative provisions to comply with a requirements, to ensuring that each source is kept under control. Radiation sources are used around the world for variose applications, in industries, research, medicine and nuclear issues. Instead planned risk for normal use of those, for orphane sources often at the first stage of early response we have lot of uncertainties: unknown composition of radionuclides, wide activity frames, different construction and question of possible external contamination. Taken into account importance of this issue in the last few years in Latvia the control on custom, borders, scrapt yards control of transit of goods, incl. metals, were reinforced and normative basis is the country were improved. Finding of sources in scrapt metal or metal production/processing facilities become often events. Such sources may be dangerous not only to persons dealing with source, but local environment too, cause releases, contamination of facility and production, extra high costs for monitoring, cleaning up and wide variety of decontamination procedures applying. Prevention of radiological incidents starts from planning of our work, and transparency the whole 'life cycle' of source, from producer to disposal, recorded and verified, as well as notified to the Authorities. Early warning response (24-hours duty) and consultative phone service at Radiation Protection Authority is maintained; guidelines and working procedures within Authority and other Institutions involving were developed and implemented. As a result, Co-60, Cs-137 and Sr-90

Orphan Sources and Fresh Fallout: Virtual Exercise in Mobile Measurement (ORPEX)

DEFF Research Database (Denmark)

Dowdall, M.; Smethurst, M.A.; Andersson, Kasper Grann

In recent years carborne gamma spectrometry has expanded from its role as a geological survey platform to serving as a useful asset in the field of emergency response to radiological and nuclear situations. Its two main applications are searching for orphan sources and for surveying in the afterm......In recent years carborne gamma spectrometry has expanded from its role as a geological survey platform to serving as a useful asset in the field of emergency response to radiological and nuclear situations. Its two main applications are searching for orphan sources and for surveying...... spectral data were generated for imaginary point sources and inserted into genu-ine carborne measurements from in the Trondheim area of Norway. Participants were presented with a typical software tool and data in a range of typical formats and asked to report the source locations and isotopes within a time...

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.

Building Sustainable Capacity for Cardiovascular Care at a Public Hospital in Western Kenya.

Science.gov (United States)

Binanay, Cynthia A; Akwanalo, Constantine O; Aruasa, Wilson; Barasa, Felix A; Corey, G Ralph; Crowe, Susie; Esamai, Fabian; Einterz, Robert; Foster, Michael C; Gardner, Adrian; Kibosia, John; Kimaiyo, Sylvester; Koech, Myra; Korir, Belinda; Lawrence, John E; Lukas, Stephanie; Manji, Imran; Maritim, Peris; Ogaro, Francis; Park, Peter; Pastakia, Sonak D; Sugut, Wilson; Vedanthan, Rajesh; Yanoh, Reuben; Velazquez, Eric J; Bloomfield, Gerald S

2015-12-08

Cardiovascular disease deaths are increasing in low- and middle-income countries and are exacerbated by health care systems that are ill-equipped to manage chronic diseases. Global health partnerships, which have stemmed the tide of infectious diseases in low- and middle-income countries, can be similarly applied to address cardiovascular diseases. In this review, we present the experiences of an academic partnership between North American and Kenyan medical centers to improve cardiovascular health in a national public referral hospital. We highlight our stepwise approach to developing sustainable cardiovascular services using the health system strengthening World Health Organization Framework for Action. The building blocks of this framework (leadership and governance, health workforce, health service delivery, health financing, access to essential medicines, and health information system) guided our comprehensive and sustainable approach to delivering subspecialty care in a resource-limited setting. Our experiences may guide the development of similar collaborations in other settings. Copyright © 2015 American College of Cardiology Foundation. Published by Elsevier Inc. All rights reserved.

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

Science.gov (United States)

Dalen, Nina; Nakitende, Ann Jacqueline; Musisi, Seggane

2009-01-01

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 addition to the fact that

"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

Psychological Distress amongst AIDS-Orphaned Children in Urban South Africa

Science.gov (United States)

Cluver, Lucie; Gardner, Frances; Operario, Don

2007-01-01

Background: South Africa is predicted to have 2.3 million children orphaned by Acquired Immune Deficiency Syndrome (AIDS) by 2020 (Actuarial Society of South Africa, 2005). There is little knowledge about impacts of AIDS-related bereavement on children, to aid planning of services. This study aimed to investigate psychological consequences of AIDS…

Riding The Waves Of Quality Improvement : Sustainability and spread in a Dutch quality improvement program for long-term care

NARCIS (Netherlands)

S.S. Slaghuis (Sarah)

2016-01-01

markdownabstractIncreasingly, sustainability and spread have become part and parcel of organizational strategy in health care. This applies in particular to organizations in the long-term care sector, which faces an increasing care demand, ageing population and labor shortage. Unfortunately,

Inventory of orphan oil and natural gas wells in the Dover and Gautreau Village areas of Westmorland County, New Brunswick

International Nuclear Information System (INIS)

Brennan, J.

1999-01-01

In 1997, the Government of New Brunswick conducted an inventory of orphan wells in the vicinity of Dover and Gautreau Village in Westmorland County. The term orphan wells refers to those oil and natural gas wells which have been abandoned and have no owner. An abandoned well refers to those wells that are no longer active and have been properly plugged. A total of 19 orphan wells were discovered with the help of landowners and historical maps. These wells are believed to have dated from 1860 to 1906. The locations of the wells were determined digitally using the Global Positioning System. The environmental conditions around the orphan wells were evaluated and classified according to a proposed system used by the State of Michigan. The wells were separated into three categories based on the amount of petroleum contamination of soil and water. Water contamination was further divided into contamination of groundwater and surface water. 7 refs., 34 figs

Nonblocking and orphan free message logging protocols

Science.gov (United States)

Alvisi, Lorenzo; Hoppe, Bruce; Marzullo, Keith

1992-12-01

Currently existing message logging protocols demonstrate a classic pessimistic vs. optimistic tradeoff. We show that the optimistic-pessimistic tradeoff is not inherent to the problem of message logging. We construct a message-logging protocol that has the positive features of both optimistic and pessimistic protocol: our protocol prevents orphans and allows simple failure recovery; however, it requires no blocking in failure-free runs. Furthermore, this protocol does not introduce any additional message overhead as compared to one implemented for a system in which messages may be lost but processes do not crash.

Process and outcome evaluation of a community intervention for orphan adolescents in western Kenya.

Science.gov (United States)

Hallfors, Denise D; Cho, Hyunsan; Mbai, Isabella; Milimo, Benson; Itindi, Janet

2012-10-01

We conducted a 2-year pilot randomized controlled trial (N = 105) in a high HIV-prevalence area in rural western Kenya to test whether providing young orphan adolescents with uniforms, school fees, and community visitors improves school retention and reduces HIV risk factors. The trial was a community intervention, limited to one community. In this paper, we examined intervention implementation and its association with outcomes using longitudinal data. We used both quantitative and qualitative methods to evaluate the community-based model for orphan HIV prevention, with recommendations for future studies. Despite promising effects after 1 year, GEE analyses showed null effects after 2 years. Volunteer community visitors, a key element of the intervention, showed little of the expected effect although qualitative reports documented active assistance to prevent orphans' school absence. For future research, we recommend capturing the transition to high school, a larger sample size, and biomarker data to add strength to the research design. We also recommend a school-based intervention approach to improve implementation and reduce infrastructure costs. Finally, we recommend evaluating nurses as agents for improving school attendance and preventing dropout because of their unique ability to address critical biopsychosocial problems.

HUNTING THE PARENT OF THE ORPHAN STREAM: IDENTIFYING STREAM MEMBERS FROM LOW-RESOLUTION SPECTROSCOPY

International Nuclear Information System (INIS)

Casey, Andrew R.; Da Costa, Gary; Keller, Stefan C.; Maunder, Elizabeth

2013-01-01

We present candidate K-giant members in the Orphan Stream that have been identified from low-resolution data taken with the AAOmega spectrograph on the Anglo-Australian Telescope. From modest signal-to-noise spectra and independent cuts in photometry, kinematics, gravity, and metallicity we yield self-consistent, highly probable stream members. We find a revised stream distance of 22.5 ± 2.0 kpc near the celestial equator and our kinematic signature peaks at V GSR = 82.1 ± 1.4 km s –1 . The observed velocity dispersion of our most probable members is consistent with arising from the velocity uncertainties alone. This indicates that at least along this line of sight, the Orphan Stream is kinematically cold. Our data indicate an overall stream metallicity of [Fe/H] = –1.63 ± 0.19 dex which is more metal-rich than previously found and unbiased by spectral type. Furthermore, the significant metallicity dispersion displayed by our most probable members, σ([Fe/H]) = 0.56 dex, suggests that the unidentified Orphan Stream parent is a dSph satellite. We highlight likely members for high-resolution spectroscopic follow-up.

Process and Outcome Evaluation of a Community Intervention for Orphan Adolescents in Western Kenya

Science.gov (United States)

Hallfors, Denise D.; Cho, Hyunsan; Mbai, Isabella; Milimo, Benson; Itindi, Janet

2012-01-01

We conducted a 2-year pilot randomized controlled trial (N = 105) in a high HIV-prevalence area in rural western Kenya to test whether providing young orphan adolescents with uniforms, school fees, and community visitors improves school retention and reduces HIV risk factors. The trial was a community intervention, limited to one community. In this paper, we examined intervention implementation and its association with outcomes using longitudinal data. We used both quantitative and qualitative methods to evaluate the community-based model for orphan HIV prevention, with recommendations for future studies. Despite promising effects after 1 year, GEE analyses showed null effects after 2 years. Volunteer community visitors, a key element of the intervention, showed little of the expected effect although qualitative reports documented active assistance to prevent orphans' school absence. For future research, we recommend capturing the transition to high school, a larger sample size, and biomarker data to add strength to the research design. We also recommend a school-based intervention approach to improve implementation and reduce infrastructure costs. Finally, we recommend evaluating nurses as agents for improving school attendance and preventing dropout because of their unique ability to address critical biopsychosocial problems. PMID:22350730

Nuclear orphan receptor TLX induces Oct-3/4 for the survival and maintenance of adult hippocampal progenitors upon hypoxia.

Science.gov (United States)

Chavali, Pavithra Lakshminarasimhan; Saini, Ravi Kanth Rao; Matsumoto, Yoshiki; Ågren, Hans; Funa, Keiko

2011-03-18

Hypoxia promotes neural stem cell proliferation, the mechanism of which is poorly understood. Here, we have identified the nuclear orphan receptor TLX as a mediator for proliferation and pluripotency of neural progenitors upon hypoxia. We found an enhanced early protein expression of TLX under hypoxia potentiating sustained proliferation of neural progenitors. Moreover, TLX induction upon hypoxia in differentiating conditions leads to proliferation and a stem cell-like phenotype, along with coexpression of neural stem cell markers. Following hypoxia, TLX is recruited to the Oct-3/4 proximal promoter, augmenting the gene transcription and promoting progenitor proliferation and pluripotency. Knockdown of Oct-3/4 significantly reduced TLX-mediated proliferation, highlighting their interdependence in regulating the progenitor pool. Additionally, TLX synergizes with basic FGF to sustain cell viability upon hypoxia, since the knockdown of TLX along with the withdrawal of growth factor results in cell death. This can be attributed to the activation of Akt signaling pathway by TLX, the depletion of which results in reduced proliferation of progenitor cells. Cumulatively, the data presented here demonstrate a new role for TLX in neural stem cell proliferation and pluripotency upon hypoxia.

Nuclear Orphan Receptor TLX Induces Oct-3/4 for the Survival and Maintenance of Adult Hippocampal Progenitors upon Hypoxia*

Science.gov (United States)

Chavali, Pavithra Lakshminarasimhan; Saini, Ravi Kanth Rao; Matsumoto, Yoshiki; Ågren, Hans; Funa, Keiko

2011-01-01

Hypoxia promotes neural stem cell proliferation, the mechanism of which is poorly understood. Here, we have identified the nuclear orphan receptor TLX as a mediator for proliferation and pluripotency of neural progenitors upon hypoxia. We found an enhanced early protein expression of TLX under hypoxia potentiating sustained proliferation of neural progenitors. Moreover, TLX induction upon hypoxia in differentiating conditions leads to proliferation and a stem cell-like phenotype, along with coexpression of neural stem cell markers. Following hypoxia, TLX is recruited to the Oct-3/4 proximal promoter, augmenting the gene transcription and promoting progenitor proliferation and pluripotency. Knockdown of Oct-3/4 significantly reduced TLX-mediated proliferation, highlighting their interdependence in regulating the progenitor pool. Additionally, TLX synergizes with basic FGF to sustain cell viability upon hypoxia, since the knockdown of TLX along with the withdrawal of growth factor results in cell death. This can be attributed to the activation of Akt signaling pathway by TLX, the depletion of which results in reduced proliferation of progenitor cells. Cumulatively, the data presented here demonstrate a new role for TLX in neural stem cell proliferation and pluripotency upon hypoxia. PMID:21135096

Generic medicines: solutions for a sustainable drug market?

Science.gov (United States)

Dylst, Pieter; Vulto, Arnold; Godman, Brian; Simoens, Steven

2013-10-01

Generic medicines offer equally high-quality treatment as originator medicines do at much lower prices. As such, they represent a considerable opportunity for authorities to obtain substantial savings. At the moment, the pharmaceutical landscape is changing and many pharmaceutical companies have altered their development and commercial strategies, combining both originator and generic divisions. In spite of this, the generic medicines industry is currently facing a number of challenges: delayed market access; the limited price differential with originator medicines; the continuous downwards pressure on prices; and the negative perception regarding generic medicines held by some key stakeholder groups. This could jeopardize the long-term sustainability of the generic manufacturing industry. Therefore, governments must focus on demand-side policies, alongside policies to accelerate market access, as the generic medicines industry will only be able to deliver competitive and sustainable prices if they are ensured a high volume. In the future, the generic medicines industry will increasingly look to biosimilars and generic versions of orphan drugs to expand their business.

Systematic review of available evidence on 11 high-priced inpatient orphan drugs

NARCIS (Netherlands)

T.A. Kanters (Tim A.); C. de Sonneville (Caroline); W.K. Redekop (Ken); L. van Hakkaart-van Roijen (Leona)

2013-01-01

markdownabstract__Abstract__ __Background__: Attention for Evidence Based Medicine (EBM) is growing, but evidence for orphan drugs is argued to be limited and inferior. This study systematically reviews the available evidence on clinical effectiveness, costeffectiveness and budget impact for

Effective Disclosure in the Fast-Fashion Industry: from Sustainability Reporting to Action

Directory of Open Access Journals (Sweden)

Sofia Garcia-Torres

2017-12-01

Full Text Available This work, set in the context of the apparel industry, proposes an action-oriented disclosure tool to help solve the sustainability challenges of complex fast-fashion supply chains (SCs. In a search for effective disclosure, it focusses on actions towards sustainability instead of the measurements and indicators of its impacts. We applied qualitative and quantitative content analysis to the sustainability reporting of the world’s two largest fast-fashion companies in three phases. First, we searched for the challenges that the organisations report they are currently facing. Second, we introduced the United Nations’ Sustainable Development Goals (SDGs framework to overcome the voluntary reporting drawback of ‘choosing what to disclose’, and revealed orphan issues. This broadened the scope from internal corporate challenges to issues impacting the ecosystems in which companies operate. Third, we analysed the reported sustainability actions and decomposed them into topics, instruments, and actors. The results showed that fast-fashion reporting has a broadly developed analysis base, but lacks action orientation. This has led us to propose the ‘Fast-Fashion Sustainability Scorecard’ as a universal disclosure framework that shifts the focus from (i reporting towards action; (ii financial performance towards sustainable value creation; and (iii corporate boundaries towards value creation for the broader SC ecosystem.

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.

Growth status of Korean orphans raised in the affluent West: anthropometric trend, multivariate determinants, and descriptive comparison with their North and South Korean peers.

Science.gov (United States)

Schwekendiek, Daniel J

2017-04-01

This paper investigates the trend in height among adult Korean orphans who were adopted in early life into affluent Western nations. Final heights of 148 females were analyzed based on a Korean government survey conducted in 2008. Height of the orphans was descriptively compared against final heights of South and North Koreans. Furthermore, statistical determinants of orphan height were investigated in multivariate regressions. Mean height of Korean orphans was 160.44 cm (SD 5.89), which was higher than that of South Koreans at 158.83 cm (SD 5.01). Both Korean orphans and South Koreans were taller than North Koreans at 155.30 cm (SD 4.94). However, height of Korean orphans stagnated at around 160-161 cm while those of North and South Koreans improved over time. In the regression analysis, the socioeconomic status of the adoptive family was statistically significant in all models, while dummies for the adoptive nations and age at adoption were insignificant. This study shows that the mean final height of women experiencing extreme environmental improvements in early-life is capped at 160-161 cm, tentatively suggesting that social stress factors in the host nation or early-life factors in the birth nation might have offset some of the environmental enrichment effects achieved through intercountry adoption.

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

The CanOE strategy: integrating genomic and metabolic contexts across multiple prokaryote genomes to find candidate genes for orphan enzymes.

Directory of Open Access Journals (Sweden)

Adam Alexander Thil Smith

2012-05-01

Full Text Available Of all biochemically characterized metabolic reactions formalized by the IUBMB, over one out of four have yet to be associated with a nucleic or protein sequence, i.e. are sequence-orphan enzymatic activities. Few bioinformatics annotation tools are able to propose candidate genes for such activities by exploiting context-dependent rather than sequence-dependent data, and none are readily accessible and propose result integration across multiple genomes. Here, we present CanOE (Candidate genes for Orphan Enzymes, a four-step bioinformatics strategy that proposes ranked candidate genes for sequence-orphan enzymatic activities (or orphan enzymes for short. The first step locates "genomic metabolons", i.e. groups of co-localized genes coding proteins catalyzing reactions linked by shared metabolites, in one genome at a time. These metabolons can be particularly helpful for aiding bioanalysts to visualize relevant metabolic data. In the second step, they are used to generate candidate associations between un-annotated genes and gene-less reactions. The third step integrates these gene-reaction associations over several genomes using gene families, and summarizes the strength of family-reaction associations by several scores. In the final step, these scores are used to rank members of gene families which are proposed for metabolic reactions. These associations are of particular interest when the metabolic reaction is a sequence-orphan enzymatic activity. Our strategy found over 60,000 genomic metabolons in more than 1,000 prokaryote organisms from the MicroScope platform, generating candidate genes for many metabolic reactions, of which more than 70 distinct orphan reactions. A computational validation of the approach is discussed. Finally, we present a case study on the anaerobic allantoin degradation pathway in Escherichia coli K-12.

Extension style in the Orphan Basin during the Mesozoic North Atlantic rifting

Science.gov (United States)

Gouiza, Mohamed; Hall, Jeremy

2013-04-01

The Orphan Basin, lying along the Newfoundland passive continental margin, has formed in Mesozoic time during the opening of the North Atlantic Ocean and the breakup of Iberia/Eurasia from North America. Regional deep seismic reflection profiles across the basin indicate that the Neoproterozoic basement has been affected by repeated extensional episodes between the Late Triassic/Jurassic and the Early Cretaceous. Deformation initiated in the eastern part of the Orphan basin in the Jurassic and migrated toward the west in the Early Cretaceous, resulting in numerous rift structures filled with Jurassic-Lower Cretaceous syn-rift successions and sealed by thick Upper Cretaceous-Cenozoic post-rift sediments. The seismic data show an extremely attenuated crust underneath the eastern and western part of the deep basin, forming two sub-basins associated with the development of rifting. The two sub-basins are separated by a wide structural high with a relatively thick crust and are bounded to the west by the continental shelf domain. Restoration of the Orphan Basin along a 2D crustal section (520 km long), yields a total amount of stretching of about 144 km, while the total crustal thinning indicates an extension of around 250 km, assuming mass conservation along the section and an initial crustal thickness of 28 km. Brittle deformation accommodated by normal faults is documented in the seismic profiles and affected essentially the present-day upper portion of the crust, and represents only 60% of the total extension which thinned the Orphan crust. The remaining crustal thinning must involve other deformation processes which are not (easily) recognizable in the seismic data. We propose two models that could explain discrepancies between brittle deformation and total crustal thinning during lithospheric extension. The first model assumes the reactivation of pre-rift inherited structures, which act as crustal-scale detachments during the early stages of rifting. The second

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)

Orphan Sources. Extending Radiological Protection outside the Regulatory Framework

International Nuclear Information System (INIS)

Eugenio Gil

2006-01-01

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)

Sustainability and transformation plans: translating the perspectives.

Science.gov (United States)

Thakrar, Sonali V; Bell, Diane

2017-10-02

Each local health economy has been tasked with producing a sustainability and transformation plan. A health economy is a system that controls and contributes to health-care resource and the effects of health services on its population. This includes commissioners, acute providers, primary care providers, community services, public health and the voluntary sector. Sustainability and transformation plans represent a shift in the way health care is planned for in England. The aim of each sustainability and transformation plan is to deliver care within existing resource limits by improving quality of care, developing new models of care and improving efficiency of care provision. The tight timescales for production of sustainability and transformation plans mean that in most cases there has been limited clinical engagement; as a result many clinicians have limited sight, understanding or ownership of the proposals within sustainability and transformation plans. As sustainability and transformation plans move into the implementation phase, this article explores the role of the clinician in the ongoing design and delivery of the local sustainability and transformation plans. By finding the common ground between the perspectives of the clinician, the commissioner and system leaders, the motivation of clinicians can be aligned with the ambitions of the sustainability and transformation plan. The common goal of a sustainability and transformation plan and the necessary collaboration required to make it successful is discussed. Ultimately, such translation is essential: clinicians are intelligent, adaptive and motivated individuals who must have a lead role in constructing and implementing plans that transform health and social care.

Quality of Cardiac Care in Canada: Recommendations for Building a Sustainable Future.

Science.gov (United States)

Young, Courtney; Lambert, Laurie; Abel, James; O'Neill, Blair J

2018-06-01

Cardiovascular (CV) disease continues to present a significant disease and economic burden in Canada. To improve the quality of care and ensure sustainability of services, a national quality improvement initiative is required. The purpose of this analysis was to review the evidence for public reporting (PR) and external benchmarking (EB) to improve patient outcomes, and to recommend a strategy to improve CV care in Canada. To incorporate recent literature, the Canadian Cardiovascular Society (CCS) commissioned the Institute of Health Economics to provide a rapid update on the literature of PR and EB. The review showed that EB is more likely to promote positive effects, such as improved mortality, morbidity, and evidence-based clinical practice, and to limit negative effects, such as access restrictions or unintended provider behaviour associated with some forms of "top-down" PR. On the basis of these findings, this we recommend the following: (1) secure funding for the provincial collection of CV quality indicators and the creation of annual National CV Quality Reports; (2) enhance the culture of using CV quality indicator data for continuous quality improvement and opportunities for national or regional EB and sharing best practices; and (3) implement ongoing evaluation and revision of CCS clinical practice guidelines incorporating key quality indicators. This is already under way to a limited extent by the CCS with its Quality Project, but intentional, sustained support needs to be secured to enhance this ongoing effort and improve the quality of CV care for all Canadians. Copyright © 2018 Canadian Cardiovascular Society. Published by Elsevier Inc. All rights reserved.

Inhibition of Estrogen Receptor Action by the Orphan Receptors, SHP and DAX-1

National Research Council Canada - National Science Library

DiRenzo, James

2003-01-01

.... In support of DoD grant # DAMD17-99-1-9163, we present our findings regarding the mechanisms by which two orphan nuclear receptors, SHP and DAX-1 inhibit the actions of ER-alpha and ER-beta action...

Orphan disease: Cherubism, optic atrophy, and short stature.

Science.gov (United States)

Jeevanandham, Balaji; Ramachandran, Rajoo; Dhanapal, Vignesh; Subramanian, Ilanchezhian; Sai, Venkata

2018-01-01

A 12-year-old female presented with complaints of progressive visual impairment in both her eyes. On clinical examination, she was short for her age and her ophthalmoscopic examination revealed bilateral optic atrophy. Computed tomography of the patient revealed multiple expansile lytic lesions of mandible suggesting cherubism. The optic atrophy was confirmed on magnetic resonance imaging, which additionally revealed bilateral retrocerebellar arachnoid cysts. This association of cherubism with optic atrophy and short stature was grouped as orphan disease by National Institutes of Health and only one case was reported in the literature so far.

Review The mental health of children orphaned by AIDS: a review of ...

African Journals Online (AJOL)

This paper reviews research on the mental health and psychological outcomes of children who are orphaned by AIDS. Studies are limited, scattered and often unpublished. The review focuses on research which is quantitative and based on primary research with uninfected children who are parentally bereaved by AIDS.

The use of drawings to facilitate interviews with orphaned children in ...

African Journals Online (AJOL)

determine their needs. In this study an orphan is a child of under 18 who has lost one or both ... The psychological trauma experienced by the children ..... no one to take the children to the clinic/hospital, and because of a lack of funds for medicine: 'I feel sick, I ..... Adolescent resilience: A framework for understanding healthy.

Inhibition of Estrogen Receptor Action by the Orphan Receptors, SHP and DAX-1

National Research Council Canada - National Science Library

DiRenzo, James

2002-01-01

In support of DoD grant # DAMD17-99-1-9163, we present our progress towards understanding the function of mechanisms of action of two orphan nuclear receptors, SHP and DAX-I as inhibitors of ER alpha and ER beta action...

Orphan Stars Found in Long Galaxy Tail

Science.gov (United States)

2007-09-01

Astronomers have found evidence that stars have been forming in a long tail of gas that extends well outside its parent galaxy. This discovery suggests that such "orphan" stars may be much more prevalent than previously thought. The comet-like tail was observed in X-ray light with NASA's Chandra X-ray Observatory and in optical light with the Southern Astrophysical Research (SOAR) telescope in Chile. The feature extends for more than 200,000 light years and was created as gas was stripped from a galaxy called ESO 137-001 that is plunging toward the center of Abell 3627, a giant cluster of galaxies. "This is one of the longest tails like this we have ever seen," said Ming Sun of Michigan State University, who led the study. "And, it turns out that this is a giant wake of creation, not of destruction." Chandra X-ray Image of ESO 137-001 and Tail in Abell 3627 Chandra X-ray Image of ESO 137-001 and Tail in Abell 3627 The observations indicate that the gas in the tail has formed millions of stars. Because the large amounts of gas and dust needed to form stars are typically found only within galaxies, astronomers have previously thought it unlikely that large numbers of stars would form outside a galaxy. "This isn't the first time that stars have been seen to form between galaxies," said team member Megan Donahue, also of MSU. "But the number of stars forming here is unprecedented." The evidence for star formation in this tail includes 29 regions of ionized hydrogen glowing in optical light, thought to be from newly formed stars. These regions are all downstream of the galaxy, located in or near the tail. Two Chandra X-ray sources are near these regions, another indication of star formation activity. The researchers believe the orphan stars formed within the last 10 million years or so. The stars in the tail of this fast-moving galaxy, which is some 220 million light years away, would be much more isolated than the vast majority of stars in galaxies. H-alpha Image of

Developing a Strategy To Educate County Departments of Social Services in the Type of Referrals Needed for a Residential Child Caring Agency.

Science.gov (United States)

Keevert, Helen

The focus of a child caring facility had changed from caring exclusively for orphans to serving a broader population of abandoned, abused, and neglected children. Because no effective marketing tool existed within this child caring agency to make agency identification and information readily accessible to county departments of social services…

The use of rites of passage in strengthening the psychosocial wellbeing of orphaned children in Botswana.

Science.gov (United States)

Thamuku, Masego; Daniel, Marguerite

2012-10-01

Children who have been bereaved in the context of AIDS may experience many challenges to their psychosocial wellbeing. Programmes to help orphaned children are usually anchored in child rights. As the individual focus of rights-based approaches is inept in African collectivist culture, NGOs tend to make use of group approaches in psychosocial support programmes. One orphan-strengthening programme in Botswana, called the Ark for Children, uses rites of passage and rites of affirmation as part of a therapeutic retreat. This study explored how rites of passage and rites of affirmation contribute to psychosocial strengthening of orphaned children in Botswana. Ten orphaned children were involved in five rounds of data collection during a 16-day therapeutic retreat; and eight social workers answered questions on the effectiveness of the therapy. A supplementary document analysis was also completed, which included retreat reports since 2001 and correspondence from community-based support workers and graduates of the programme. Participants reported that the rites used during the retreat helped them to commit to therapeutic transformation. During a retreat, all the participants witness and support each individual going through each rite - a process reported to foster and strengthen group formation. It was documented that the symbols used as part of the themed rites of affirmation are used by participants for years afterwards as reminders of their transformation and commitment to the group. We conclude that rites of passage can provide a powerful tool to help children commit to therapeutic transformation, build the supportive group, and enable the community to recognise and affirm that the children return as changed individuals and members of the group.

Prevalence and predictors of HIV-related stigma among institutional- and community-based caregivers of orphans and vulnerable children living in five less-wealthy countries

Directory of Open Access Journals (Sweden)

Messer Lynne C

2010-08-01

Full Text Available Abstract Background In the face of the HIV/AIDS epidemic that has contributed to the dramatic increase in orphans and abandoned children (OAC worldwide, caregiver attitudes about HIV, and HIV-related stigma, are two attributes that may affect caregiving. Little research has considered the relationship between caregiver attributes and caregiver-reported HIV-related stigma. In light of the paucity of this literature, this paper will describe HIV-related stigma among caregivers of OAC in five less wealthy nations. Methods Baseline data were collected between May 2006 through February 2008. The sample included 1,480 community-based and 192 institution-based caregivers. Characteristics of the community-based and institution-based caregivers are described using means and standard deviations for continuous variables or counts and percentages for categorical variables. We fit logistic regression models, both for the full sample and separately for community-based and institution-based caregivers, to explore predictors of acceptance of HIV. Results Approximately 80% of both community-based and institution-based caregivers were female; and 84% of institution-based caregivers, compared to 66% of community-based caregivers, said that they would be willing to care for a relative with HIV. Similar proportions were reported when caregivers were asked if they were willing to let their child play with an HIV-infected child. In a multivariable model predicting willingness to care for an HIV-infected relative, adjusted for site fixed effects, being an institution-based caregiver was associated with greater willingness (less stigma than community-based caregivers. Decreased willingness was reported by older respondents, while willingness increased with greater formal education. In the adjusted models predicting willingness to allow one's child to play with an HIV-infected child, female gender and older age was associated with less willingness. However, willingness

From Early Childhood Development Policy to Sustainability: The Fragility of Community-Based Childcare Services in Malawi

Science.gov (United States)

Neuman, Michelle J.; McConnell, Christin; Kholowa, Foster

2014-01-01

Over the past 20 years, more than 6,000 community-based childcare centers (CBCCs) have been created in mostly rural areas of Malawi. Although the original purpose of these CBCCs was to meet the care needs of orphans and vulnerable children affected by the HIV/AIDS pandemic, the services have since expanded their mandate to provide early…

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.

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.

Housing conditions and mental health of orphans in South Africa

OpenAIRE

Marais, Lochner; Sharp, Carla; Pappin, Michele; Lenka, Molefi; Cloete, Jan; Skinner, Donald; Serekoane, Joe

2013-01-01

Literature from the developed world suggests that poor housing conditions and housing environments contribute to poor mental health outcomes, although research results are mixed. This study investigates the relationship between housing conditions and the socio-emotional health of orphans and vulnerable children (OVC) in South Africa. The results of the study are mainly inconclusive, although it is suggested that methodological considerations play a vital role in explaining the mixed results. ...

Oral hygiene status of the orphan children in Ar-Rohman Foster Home Bandung after dental health education

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Nurayni Tri Hapsari

2017-11-01

Full Text Available Introduction: Oral hygiene status is a condition of a person’s oral cavity. Oral hygiene status can be assessed using the Oral Hygiene Index Simplified (OHI-S by Greene & Vermillion. The education given regarding oral health is one of health promotion with the purpose to increase the ability of children in terms of maintaining and improving their oral hygiene. The purpose of this study was to determine the difference of the orphans in Ar-Rohman Foster Home Bandung oral health status before and after three times of oral health education. Methods: The type of this research was a pre-experimental study with one group of pretest-posttest design with total sampling technique. Subjects of this research were orphans aged 13-15 years old. The respondents got the clinical examination of OHI-S before and after the oral health education was given for three times. The data obtained then tested using normality test, if the data were normally distributed, then analysed with a paired t-test, and if the data was not normally distributed, then will be analysed with a Wilcoxon test. Results: The results showed a significant decrease of plaque index after oral health education was given to the orphans. The examination of the calculus index (CI-S did not show any change before and after oral health education. OHI-S of children, however, showed a significant decrease. Conclusion: There was a significant increase in the orphans in Ar-Rohman Foster Home Bandung oral health status after given three times of oral health education.

Thirty Years of Orphan Drug Legislation and the Development of Drugs to Treat Rare Seizure Conditions: A Cross Sectional Analysis

OpenAIRE

D?ring, Jan Henje; Lampert, Anette; Hoffmann, Georg F.; Ries, Markus

2016-01-01

Background Epilepsy is a serious chronic health condition with a high morbidity impairing the life of patients and afflicted families. Many epileptic conditions, especially those affecting children, are rare disorders generating an urgent medical need for more efficacious therapy options. Therefore, we assessed the output of the US and European orphan drug legislations. Methods Quantitative analysis of the FDA and EMA databases for orphan drug designations according to STrengthening the Repor...

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

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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.

A methodological approach and framework for sustainability assessment in NGO-implemented primary health care programs.

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Sarriot, Eric G; Winch, Peter J; Ryan, Leo J; Bowie, Janice; Kouletio, Michelle; Swedberg, Eric; LeBan, Karen; Edison, Jay; Welch, Rikki; Pacqué, Michel C

2004-01-01

An estimated 10.8 million children under 5 continue to die each year in developing countries from causes easily treatable or preventable. Non governmental organizations (NGOs) are frontline implementers of low-cost and effective child health interventions, but their progress toward sustainable child health gains is a challenge to evaluate. This paper presents the Child Survival Sustainability Assessment (CSSA) methodology--a framework and process--to map progress towards sustainable child health from the community level and upward. The CSSA was developed with NGOs through a participatory process of research and dialogue. Commitment to sustainability requires a systematic and systemic consideration of human, social and organizational processes beyond a purely biomedical perspective. The CSSA is organized around three interrelated dimensions of evaluation: (1) health and health services; (2) capacity and viability of local organizations; (3) capacity of the community in its social ecological context. The CSSA uses a participatory, action-planning process, engaging a 'local system' of stakeholders in the contextual definition of objectives and indicators. Improved conditions measured in the three dimensions correspond to progress toward a sustainable health situation for the population. This framework opens new opportunities for evaluation and research design and places sustainability at the center of primary health care programming.

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

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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.

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

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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.

Orphan disease: Cherubism, optic atrophy, and short stature

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Balaji Jeevanandham

2018-01-01

Full Text Available A 12-year-old female presented with complaints of progressive visual impairment in both her eyes. On clinical examination, she was short for her age and her ophthalmoscopic examination revealed bilateral optic atrophy. Computed tomography of the patient revealed multiple expansile lytic lesions of mandible suggesting cherubism. The optic atrophy was confirmed on magnetic resonance imaging, which additionally revealed bilateral retrocerebellar arachnoid cysts. This association of cherubism with optic atrophy and short stature was grouped as orphan disease by National Institutes of Health and only one case was reported in the literature so far.

Functional profiles of orphan membrane transporters in the life cycle of the malaria parasite

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Kenthirapalan, S.; Waters, A.P.; Matuschewski, K.; Kooij, T.W.A.

2016-01-01

Assigning function to orphan membrane transport proteins and prioritizing candidates for detailed biochemical characterization remain fundamental challenges and are particularly important for medically relevant pathogens, such as malaria parasites. Here we present a comprehensive genetic analysis of

Sustainable clothing: challenges, barriers and interventions for encouraging more sustainable consumer behaviour

OpenAIRE

Harris, Fiona; Roby, Helen; Dibb, Sally

2016-01-01

Research with consumers has revealed limited awareness of the sustainability impact of clothing (Goworek et al., 2012). Semi-structured interviews conducted with a range of experts in sustainable clothing to increase understanding of the challenges for sustainable clothing revealed that a focus on sustainability alone will not drive the necessary changes in consumers’ clothing purchase, care and disposal behaviour for three reasons: (i) clothing sustainability is too complex; (ii) consumers a...

Peer mentorship program on HIV/AIDS knowledge, beliefs, and prevention attitudes among orphaned adolescents: an evidence based practice

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Nabunya, Proscovia; Ssewamala, Fred M.; Mukasa, Miriam N.; Byansi, William; Nattabi, Jennifer

2015-01-01

Adolescents and young adults in sub-Saharan Africa (SSA) are particularly vulnerable to human immunodeficiency virus (HIV) and acquired immune deficiency syndrome (AIDS) infection. Adolescents orphaned as a direct result of HIV/AIDS are at an elevated risk of acquiring HIV/AIDS and other sexually transmitted infections. However, limited empirical evidence exists on HIV knowledge and prevention programs, especially those designed to address HIV information gaps among adolescents. This study evaluates the effect of a peer mentorship program provided in addition to other supportive services on HIV/AIDS knowledge, beliefs, and prevention attitudes, among school-going orphaned adolescents in southern Uganda. We utilize data from the Bridges to the Future Study, a 5-year longitudinal randomized experimental study funded by the National Institute of Child Health and Human Development. Out of the 1410 adolescents enrolled in the study (average age = 12.7 at study initiation), 855 of them participated in a nine-session, curriculum based peer mentorship program. We analyzed data collected at baseline and 12-months post intervention initiation. The results from bivariate and regression analysis indicate that, controlling for socioeconomic characteristics, adolescents who participated in a peer mentorship program were more likely than non-participants to report increased scores on HIV/AIDS knowledge(b = .86, 95%CI = .47 – 1.3, p ≤ .001); better scores on desired HIV/AIDS-related beliefs (b = .29, 95%CI = .06 – .52, p ≤ .01); and better scores on HIV/AIDS prevention attitudes (b = .76, 95%CI = .16 – 1.4, p ≤ .01). Overall, the study findings point to the potential role a of peer mentorship program in promoting the much-desired HIV/AIDS knowledge, beliefs, and prevention attitudes among orphaned adolescents. Future programs and policies that support AIDS-orphaned adolescents in sub-Saharan Africa should consider incorporating peer mentoring programs that provide

The role of globalization in drug development and access to orphan drugs: orphan drug legislation in the US/EU and in Latin America [v1; ref status: indexed, http://f1000r.es/3ix

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Renée J.G. Arnold

2015-02-01

Full Text Available Compared to a decade ago, nearly three times as many drugs for rare diseases are slated for development. This article addresses the market access issues associated with orphan drug status in Europe and the United States in contrast to the legislation in five Latin American (LA countries that have made strides in this regard--Mexico, Brazil, Colombia, Chile and Argentina. Based on the success of orphan drug legislation in the EU and US, LA countries should strive to adopt similar strategies with regard to rare diseases and drug development. With the implementation of new targeted regulations, reimbursement strategies, and drug approvals, accessibility to treatment will be improved for people afflicted with rare diseases in these developing countries.

Patient and public involvement in primary care research - an example of ensuring its sustainability.

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Jinks, Clare; Carter, Pam; Rhodes, Carol; Taylor, Robert; Beech, Roger; Dziedzic, Krysia; Blackburn, Steven; Hughes, Rhian; Ong, Bie Nio

2016-01-01

The international literature on patient and public involvement (PPI) in research covers a wide range of issues, including active lay involvement throughout the research cycle; roles that patients/public can play; assessing impact of PPI and recommendations for good PPI practice. One area of investigation that is less developed is the sustainability and impact of PPI beyond involvement in time-limited research projects. This paper focuses on the issues of sustainability, the importance of institutional leadership and the creation of a robust infrastructure in order to achieve long-term and wide-ranging PPI in research strategy and programmes. We use the case of a Primary Care Research Centre to provide a historical account of the evolution of PPI in the Centre and identified a number of key conceptual issues regarding infrastructure, resource allocation, working methods, roles and relationships. The paper concludes about the more general applicability of the Centre's model for the long-term sustainability of PPI in research.

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

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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

The Thai-Australian Health Alliance: developing health management capacity and sustainability for primary health care services.

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Briggs, D S; Tejativaddhana, P; Cruickshank, M; Fraser, J; Campbell, S

2010-11-01

There have been recent calls for a renewed worldwide focus on primary health care. The Thai-Australian Health Alliance addresses this call by developing health care management capability in primary health care professionals in rural Thailand. This paper describes the history and current activities of the Thai-Australian Health Alliance and its approaches to developing health care management capacity for primary care services through international collaborations in research, education and training over a sustained time period. The Alliance's approach is described herein as a distributed network of practices with access to shared knowledge through collaboration. Its research and education approaches involve action research, multi-methods projects, and evaluative studies in the context of workshops and field studies. WHO principles underpin this approach, with countries sharing practical experiences and outcomes, encouraging leadership and management resource networks, creating clearing houses/knowledge centres, and harmonising and aligning partners with their country's health systems. Various evaluations of the Alliance's activities have demonstrated that a capacity building approach that aligns researchers, educators and health practitioners in comparative and reflective activities can be effective in transferring knowledge and skills among a collaboration's partners. Project participants, including primary health care practitioners, health policy makers and academics embraced the need to acquire management skills to sustain primary care units. Participants believe that the approaches described herein were crucial to developing the management skills needed of health care professionals for rural and remote primary health care. The implementation of this initiative was challenged by pre-existing low opinions of the importance of the management role in health care, but with time the Alliance's activities highlighted for all the importance of health care management

Sustained transfer of knowledge to practice in long-term care: facilitators and barriers of a mental health learning initiative.

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Stolee, Paul; McAiney, Carrie A; Hillier, Loretta M; Harris, Diane; Hamilton, Pam; Kessler, Linda; Madsen, Victoria; Le Clair, J Kenneth

2009-01-01

This article explores facilitators and barriers to the impact and sustainability of a learning initiative to increase capacity of long-term care (LTC) homes to manage the mental health needs of older persons, through development of in-house Psychogeriatric Resource Persons (PRPs). Twenty interviews were conducted with LTC staff. Management support, particularly designation of time for PRP activities, development of PRP teams, and supportive learning strategies were significant factors affecting sustained knowledge transfer. Continuing education that is provided and evaluated on an ongoing basis, secures management commitment, is integrated within a broader system strategy, and provides on-the-job support has the greatest potential to affect care.

"We Are Never Invited": School Children Using Collage to Envision Care and Support in Rural Schools

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Khanare, Fumane P.; de Lange, Naydene

2017-01-01

The voices of school children who are orphaned and vulnerable are more often than not missing from conversations about their care and support at school. In a rural ecology this is even more so the case. This article draws on a study with school children in rural KwaZulu-Natal and explores their constructions of care and support in the age of HIV…

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

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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

The influence of the European paediatric regulation on marketing authorisation of orphan drugs for children.

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Kreeftmeijer-Vegter, Annemarie Rosan; de Boer, Anthonius; van der Vlugt-Meijer, Roselinda H; de Vries, Peter J

2014-08-05

Drug development for rare diseases is challenging, especially when these orphan drugs (OD) are intended for children. In 2007 the EU Paediatric Drug Regulation was enacted to improve the development of high quality and ethically researched medicines for children through the establishment of Paediatric Investigation Plans (PIPs). The effect of the EU Paediatric Drug Regulation on the marketing authorisation (MA) of drugs for children with rare diseases was studied. Data on all designated orphan drugs, their indication, MA, PIPs and indication group (adult or child) were obtained from the European Medicines Agency (EMA). The outcome and duration of the process from orphan drug designation (ODD) to MA, was compared, per indication, by age group. The effect of the Paediatric Drug Regulation, implemented in 2007, on the application process was assessed with survival analysis. Eighty-one orphan drugs obtained MA since 2000 and half are authorised for (a subgroup of) children; another 34 are currently undergoing further investigations in children through agreed PIPs. The Paediatric Drug Regulation did not significantly increase the number of ODDs with potential paediatric indications (58% before vs 64% after 2007 of ODDs, p = 0.1) and did not lead to more MAs for ODs with paediatric indications (60% vs 43%, p = 0.22). ODs authorised after 2007 had a longer time to MA than those authorised before 2007 (Hazard ratio (95% CI) 2.80 (1.84-4.28), p < 0.001); potential paediatric use did not influence the time to MA (Hazard ratio (95% CI) 1.14 (0.77-1.70), p = 0.52). The EU Paediatric Drug Regulation had a minor impact on development and availability of ODs for children, was associated with a longer time to MA, but ensured the further paediatric development of drugs still off-label to children. The impact of the Paediatric Drug Regulation on research quantity and quality in children through PIPs is not yet clear.

Development and implementation of a peer-based mental health support programme for adolescents orphaned by HIV/AIDS in South Africa.

Science.gov (United States)

Thupayagale-Tshweneagae, Gloria

2011-12-01

The article describes a framework and the process for the development of the peer-based mental health support programme and its implementation. The development of a peer-based mental health support programme is based on Erikson's theory on the adolescent phase of development, the psycho-educational processes; the peer approach and the orphaned adolescents lived experiences as conceptual framework. A triangulation of five qualitative methods of photography, reflective diaries, focus groups, event history calendar and field notes were used to capture the lived experiences of adolescents orphaned to HIV and AIDS. Analysis of data followed Colaizzi's method of data analysis. The combination of psycho-education, Erikson's stages of development and peer support assisted the participants to gain knowledge and skills to overcome adversity and to assist them to become to more resilient. The peer based mental health support programme if used would enhance the mental health of adolescent orphans.

Rates of trauma spectrum disorders and risks of posttraumatic stress disorder in a sample of orphaned and widowed genocide survivors

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Susanne Schaal

2011-06-01

Full Text Available During the Rwandan genocide of 1994, nearly one million people were killed within a period of 3 months.The objectives of this study were to investigate the levels of trauma exposure and the rates of mental health disorders and to describe risk factors of posttraumatic stress reactions in Rwandan widows and orphans who had been exposed to the genocide.Trained local psychologists interviewed orphans (n=206 and widows (n=194. We used the PSS-I to assess posttraumatic stress disorder (PTSD, the Hopkins Symptom Checklist to assess depression and anxiety symptoms, and the M.I.N.I. to assess risk of suicidality.Subjects reported having been exposed to a high number of different types of traumatic events with a mean of 11 for both groups. Widows displayed more severe mental health problems than orphans: 41% of the widows (compared to 29% of the orphans met symptom criteria for PTSD and a substantial proportion of widows suffered from clinically significant depression (48% versus 34% and anxiety symptoms (59% versus 42% even 13 years after the genocide. Over one-third of respondents of both groups were classified as suicidal (38% versus 39%. Regression analysis indicated that PTSD severity was predicted mainly by cumulative exposure to traumatic stressors and by poor physical health status. In contrast, the importance given to religious/spiritual beliefs and economic variables did not correlate with symptoms of PTSD.While a significant portion of widows and orphans continues to display severe posttraumatic stress reactions, widows seem to constitute a particularly vulnerable survivor group. Our results point to the chronicity of mental health problems in this population and show that PTSD may endure over time if not addressed by clinical intervention. Possible implications of poor mental health and the need for psychological intervention are discussed.

Paying for the Orphan Drug System: break or bend? Is it time for a new evaluation system for payers in Europe to take account of new rare disease treatments?

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Hughes-Wilson Wills

2012-09-01

Full Text Available Abstract Since its enactment in 2000, the European Orphan Medicinal Products Regulation has allowed the review and approval of approaching 70 treatments for some 55 different conditions in Europe. Success does not come without a price, however. Many of these so-called “orphan drugs” have higher price points than treatments for more common diseases. This has been raising debate as to whether the treatments are worth it, which, in turn risks blocking patient access to treatment. To date, orphan drugs have only accounted for a small percentage of the overall drug budget. It would appear that, with increasing numbers of orphan drugs, governments are concerned about the future budget impact and their cost-effectiveness in comparison with other healthcare interventions. Orphan drugs are under the spotlight, something that is likely to continue as the economic crisis in Europe takes hold and governments respond with austerity measures that include cuts to healthcare expenditures. Formally and informally, governments are looking at how they are going to handle orphan drugs in the future. Collaborative proposals between EU governments to better understand the value of orphan drugs are under consideration. In recent years there has been increasing criticism of behaviours in the orphan drug field, mainly centring on two key perceptions of the system: the high prices of orphan drugs and their inability to meet standard cost-effectiveness thresholds; and the construct of the system itself, which allows companies to gain the benefits that accrue from being badged as an orphan drug. The authors hypothesise that, by examining these criticisms individually, one might be able to turn these different “behaviours” into criteria for the creation of a system to evaluate new orphan drugs coming onto the market. It has been acknowledged that standard methodologies for Health Technology Assessments (HTA will need to be tailored to take into account the

The human orphan nuclear receptor tailless (TLX, NR2E1 is druggable.

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Cindy Benod

Full Text Available Nuclear receptors (NRs are an important group of ligand-dependent transcriptional factors. Presently, no natural or synthetic ligand has been identified for a large group of orphan NRs. Small molecules to target these orphan NRs will provide unique resources for uncovering regulatory systems that impact human health and to modulate these pathways with drugs. The orphan NR tailless (TLX, NR2E1, a transcriptional repressor, is a major player in neurogenesis and Neural Stem Cell (NSC derived brain tumors. No chemical probes that modulate TLX activity are available, and it is not clear whether TLX is druggable. To assess TLX ligand binding capacity, we created homology models of the TLX ligand binding domain (LBD. Results suggest that TLX belongs to an emerging class of NRs that lack LBD helices α1 and α2 and that it has potential to form a large open ligand binding pocket (LBP. Using a medium throughput screening strategy, we investigated direct binding of 20,000 compounds to purified human TLX protein and verified interactions with a secondary (orthogonal assay. We then assessed effects of verified binders on TLX activity using luciferase assays. As a result, we report identification of three compounds (ccrp1, ccrp2 and ccrp3 that bind to recombinant TLX protein with affinities in the high nanomolar to low micromolar range and enhance TLX transcriptional repressive activity. We conclude that TLX is druggable and propose that our lead compounds could serve as scaffolds to derive more potent ligands. While our ligands potentiate TLX repressive activity, the question of whether it is possible to develop ligands to de-repress TLX activity remains open.

The human orphan nuclear receptor tailless (TLX, NR2E1) is druggable.

Science.gov (United States)

Benod, Cindy; Villagomez, Rosa; Filgueira, Carly S; Hwang, Peter K; Leonard, Paul G; Poncet-Montange, Guillaume; Rajagopalan, Senapathy; Fletterick, Robert J; Gustafsson, Jan-Åke; Webb, Paul

2014-01-01

Nuclear receptors (NRs) are an important group of ligand-dependent transcriptional factors. Presently, no natural or synthetic ligand has been identified for a large group of orphan NRs. Small molecules to target these orphan NRs will provide unique resources for uncovering regulatory systems that impact human health and to modulate these pathways with drugs. The orphan NR tailless (TLX, NR2E1), a transcriptional repressor, is a major player in neurogenesis and Neural Stem Cell (NSC) derived brain tumors. No chemical probes that modulate TLX activity are available, and it is not clear whether TLX is druggable. To assess TLX ligand binding capacity, we created homology models of the TLX ligand binding domain (LBD). Results suggest that TLX belongs to an emerging class of NRs that lack LBD helices α1 and α2 and that it has potential to form a large open ligand binding pocket (LBP). Using a medium throughput screening strategy, we investigated direct binding of 20,000 compounds to purified human TLX protein and verified interactions with a secondary (orthogonal) assay. We then assessed effects of verified binders on TLX activity using luciferase assays. As a result, we report identification of three compounds (ccrp1, ccrp2 and ccrp3) that bind to recombinant TLX protein with affinities in the high nanomolar to low micromolar range and enhance TLX transcriptional repressive activity. We conclude that TLX is druggable and propose that our lead compounds could serve as scaffolds to derive more potent ligands. While our ligands potentiate TLX repressive activity, the question of whether it is possible to develop ligands to de-repress TLX activity remains open.

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

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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.

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

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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

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

78 FR 51732 - The Food and Drug Administration/European Medicines Agency Orphan Product Designation and Grant...

Science.gov (United States)

2013-08-21

..., and the FDA Orphan Products Grant program to participants representing pharmaceutical, biotechnology... treatment of a rare disease or condition in order to discuss the processes for putting together an...

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.

Scalable, sustainable cost-effective surgical care: a model for safety and quality in the developing world, part III: impact and sustainability.

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

The Guwahati Comprehensive Cleft Care Center (GCCCC) utilizes a high-volume, subspecialized institution to provide safe, quality, and comprehensive and cost-effective surgical care to a highly vulnerable patient population. The GCCCC utilized a diagonal model of surgical care delivery, with vertical inputs of mission-based care transitioning to investments in infrastructure and human capital to create a sustainable, local care delivery system. Over the first 2.5 years of service (May 2011-November 2013), the GCCCC made significant advances in numerous areas. Progress was meticulously documented to evaluate performance and provide transparency to stakeholders including donors, government officials, medical oversight bodies, employees, and patients. During this time period, the GCCCC provided free operations to 7,034 patients, with improved safety, outcomes, and multidisciplinary services while dramatically decreasing costs and increasing investments in the local community. The center has become a regional referral cleft center, and governments of surrounding states have contracted the GCCCC to provide care for their citizens with cleft lip and cleft palate. Additional regional and global impact is anticipated through continued investments into education and training, comprehensive services, and research and outcomes. The success of this public private partnership demonstrates the value of this model of surgical care in the developing world, and offers a blueprint for reproduction. The GCCCC experience has been consistent with previous studies demonstrating a positive volume-outcomes relationship, and provides evidence for the value of the specialty hospital model for surgical delivery in the developing world.

From orphan virus to pathogen: the path to the clinical lab

OpenAIRE

Li, Linlin; Delwart, Eric

2011-01-01

Viral metagenomics has recently yielded numerous previously uncharacterized viral genomes from human and animal samples. We review some of the metagenomics tools and strategies to determine which orphan viruses are likely pathogens. Disease association studies compare viral prevalence in patients with unexplained symptoms versus healthy individuals but require these case and control groups to be closely matched epidemiologically. The development of an antibody response in convalescent serum c...

Care of HIV-positive orphans by elderly people in Swaziland

African Journals Online (AJOL)

covers the challenges that they face in providing such a crucial service, as well as the strategies ... care framework was used to analyse the process of caregiving and as a visionary to evaluate .... quick recovery of the sick children. Assisting.

Small steps to health: building sustainable partnerships in pediatric obesity care.

Science.gov (United States)

Pomietto, Mo; Docter, Alicia Dixon; Van Borkulo, Nicole; Alfonsi, Lorrie; Krieger, James; Liu, Lenna L

2009-06-01

Given the prevalence of childhood obesity and the limited support for preventing and managing obesity in primary care settings, the Seattle Children's Hospital's Children's Obesity Action Team has partnered with Steps to Health King County to develop a pediatric obesity quality-improvement project. Primary care clinics joined year-long quality-improvement collaboratives to integrate obesity prevention and management into the clinic setting by using the chronic-disease model. Sustainability was enhanced through integration at multiple levels by emphasizing small, consistent behavior changes and self-regulation of eating/feeding practices with children, teenagers, and families; building local community partnerships; and encouraging broader advocacy and policy change. Cultural competency and attention to disparities were integrated into quality-improvement efforts. . Participating clinics were able to increase BMI measurement and weight classification; integrate management of overweight/obese children and family and self-management support; and grow community collaborations. Over the course of 4 years, this project grew from a local effort involving 3 clinics to a statewide program recently adopted by the Washington State Department of Health. This model can be used by other states/regions to develop pediatric obesity quality-improvement programs to support the assessment, prevention, and management of childhood obesity. Furthermore, these health care efforts can be integrated into broader community-wide childhood-obesity action plans.

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

Directory of Open Access Journals (Sweden)

Buykx Penny

2012-03-01

Full Text Available Abstract Background 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. Methods 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. Results 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. Conclusions 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.

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.

Structural basis for corepressor assembly by the orphan nuclear receptor TLX.

Science.gov (United States)

Zhi, Xiaoyong; Zhou, X Edward; He, Yuanzheng; Searose-Xu, Kelvin; Zhang, Chun-Li; Tsai, Chih-Cheng; Melcher, Karsten; Xu, H Eric

2015-02-15

The orphan nuclear receptor TLX regulates neural stem cell self-renewal in the adult brain and functions primarily as a transcription repressor through recruitment of Atrophin corepressors, which bind to TLX via a conserved peptide motif termed the Atro box. Here we report crystal structures of the human and insect TLX ligand-binding domain in complex with Atro box peptides. In these structures, TLX adopts an autorepressed conformation in which its helix H12 occupies the coactivator-binding groove. Unexpectedly, H12 in this autorepressed conformation forms a novel binding pocket with residues from helix H3 that accommodates a short helix formed by the conserved ALXXLXXY motif of the Atro box. Mutations that weaken the TLX-Atrophin interaction compromise the repressive activity of TLX, demonstrating that this interaction is required for Atrophin to confer repressor activity to TLX. Moreover, the autorepressed conformation is conserved in the repressor class of orphan nuclear receptors, and mutations of corresponding residues in other members of this class of receptors diminish their repressor activities. Together, our results establish the functional conservation of the autorepressed conformation and define a key sequence motif in the Atro box that is essential for TLX-mediated repression. © 2015 Zhi et al.; Published by Cold Spring Harbor Laboratory Press.

Growing up without parents: socialisation and gender relations in orphaned-child-headed households in rural Zimbabwe.

Science.gov (United States)

Francis-Chizororo, Monica

2010-01-01

The most distressing consequences of the HIV/AIDS pandemic's impact on children has been the development of child-headed households (CHHs). Child 'only' households challenge notions of the ideal home, family, and 'normal' childhood, as well as undermining international attempts to institute children's rights. The development of these households raises practical questions about how the children will cope without parental guidance during their childhood and how this experience will affect their adulthood. Drawing on ethnographic research with five child heads and their siblings, this article explores how orphaned children living in 'child only' households organise themselves in terms of household domestic and paid work roles, explores the socialisation of children by children and the negotiation of teenage girls' movement. Further, it examines whether the orphaned children are in some way attempting to 'mimic' previously existing family/household gender relations after parental death. The study showed that all members in the CHHs irrespective of age and gender are an integral part of household labour including food production. Although there is masculinisation of domestic chores in boys 'only' households, roles are distributed by age. On the other hand, households with a gender mix tended to follow traditional gender norms. Conflict often arose when boys controlled teenage girls' movement and sexuality. There is a need for further research on CHHs to better understand orphans' experiences, and to inform policy interventions.

Stripper, shut-in and orphan wells in joint operations

International Nuclear Information System (INIS)

Nixon, R.

1999-01-01

Low productivity wells, stripper wells, can be an excellent source of income to independent operators or small companies, but a serious financial burden for larger companies. Shut-in wells, for most companies, are either waiting on a market and production facilities, or represent deferred abandonment liabilities. Orphan wells also reflect financial distress. The firm, Cord Oil and Gas Management Ltd., was formed in 1986 to specifically assist oil and gas companies, sophisticated investors and financial institutions with the management, enhancement and disposition of non-core or low productivity assets. This type of production, depending on the number of wells and cumulative production, can be the life blood of a small organization or a serious drain on the administrative personnel and financial resources of larger organizations. Philosophically, industry and/or government needs to manage the eventuality of abandonments by establishing financial criteria. Some suggestions for industry include: (1) establish provisions within joint operating agreements to set aside an abandonment and environmental cleanup fund; (2) minimize the inventory of abandonment candidates by an ongoing program of reclamation; (3) offset abandonment costs with salvage value of tangible equipment under AFE approval; and (4) voluntarily restrict transfer abandonment liabilities with producing assets on a selective basis. Some suggestions for governments include: (1) fund the orphan well by a deposit for every well drilled; (2) restrict the transfer of liabilities for abandoned and inactive wells by ensuring that the transferee is financially capable; and (3) access the chain of title to ensure non-operators remain responsible for the proportionate shares of abandonment and cleanup costs

An Initial Exploration of the Therapeutic Impact of Music on Genocide Orphans in Rwanda

Science.gov (United States)

d'Ardenne, Patricia; Kiyendeye, Moses

2015-01-01

The 1994 Rwandan Genocide murdered over a million and brought on incalculable distress to survivors. An non-governmental organisation, "Network for Africa," has a music programme to rehabilitate orphans in Kigali, now entering adulthood. This naturalistic study investigated whether music had transformational meaning for participants.…

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

Directory of Open Access Journals (Sweden)

Ryo Odachi, RN, MA

2017-09-01

Full Text Available Summary: Purpose: 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. Methods: 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. 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.” 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. Conclusions: 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. Keywords: terminal care, aged, long-term care, qualitative research

Dealing with Uncertainty and Accounting for Social Value Judgments in Assessments of Orphan Drugs: Evidence from Four European Countries.

Science.gov (United States)

Nicod, Elena; Berg Brigham, Karen; Durand-Zaleski, Isabelle; Kanavos, Panos

To better understand the reasons for differences in reimbursement decisions for orphan drugs in four European countries that were not readily apparent from health technology assessment (HTA) reports and operating procedures. Semistructured interviews with representatives of HTA bodies in England, Scotland, Sweden, and France were conducted. An interview topic guide was developed on the basis of findings from a systematic comparison of HTA decisions for 10 orphan drugs. Qualitative thematic data analysis was applied to the interview transcripts using the framework approach. Eight representatives from the four HTA bodies were interviewed between March and June 2015. Evidentiary requirements and approaches to dealing with imperfect or incomplete evidence were explored, including trial design and duration, study population and subgroups, comparators, and end points. Interviewees agreed that decisions regarding orphan drugs are made in a context of lower quality evidence, and the threshold of acceptable uncertainty varied by country. Some countries imposed higher evidentiary standards for greater clinical claims, which may be more challenging for orphan diseases. The acceptability of surrogate end points was not consistent across countries nor were the validation requirements. The most common social value judgments identified related to innovation, disease severity, and unmet need. Differences were seen in the way these concepts were defined and accounted for across countries. Although agreement was seen in evidentiary requirements or preferences, there were subtle differences in the circumstances in which uncertain evidence may be considered acceptable, possibly explaining differences in HTA recommendations across countries. Copyright © 2017 International Society for Pharmacoeconomics and Outcomes Research (ISPOR). Published by Elsevier Inc. All rights reserved.

Orphan Basin crustal structure from a dense wide-angle seismic profile - Tomographic inversion

Science.gov (United States)

Watremez, Louise; Lau, K. W. Helen; Nedimović, Mladen R.; Louden, Keith E.; Karner, Garry D.

2014-05-01

Orphan Basin is located on the eastern margin of Canada, offshore of Newfoundland and East of Flemish Cap. It is an aborted continental rift formed by multiple episodes of rifting. The crustal structure across the basin has been determined by an earlier refraction study using 15 instruments on a 550 km long line. It shows that the continental crust was extended over an unusually wide region but did not break apart. The crustal structure of the basin thus documents stages in the formation of a magma-poor rifted margin up to crustal breakup. The OBWAVE (Orphan Basin Wide-Angle Velocity Experiment) survey was carried out to image crustal structures across the basin and better understand the processes of formation of this margin. The spacing of the 89 recording stations varies from 3 to 5 km along this 500-km-long line, which was acquired along a pre-existing reflection line. The highest resolution section corresponds to the part of the profile where the crust was expected to be the thinnest. We present the results from a joint tomography inversion of first and Moho reflected arrival times. The high data density allows us to define crustal structures with greater detail than for typical studies and to improve the understanding of the processes leading to the extreme stretching of continental crust. The final model was computed following a detailed parametric study to determine the optimal parameters controlling the ray-tracing and the inversion processes. The final model shows very good resolution. In particular, Monte Carlo standard deviations of crustal velocities and Moho depths are generally Orphan Basin is the result of rifting of a non-homogeneous Avalon terrane where the lower crust is primarily ductile.

Management of 'orphan' sources

International Nuclear Information System (INIS)

Telleria, D.; Spano, F.; Rudelli, M.D.

1998-01-01

The experience has shown that most of the accidents with severe radiological consequences take place when radioactive sources were beyond the control system. In Argentina, the primary framework in radiological safety was established in the late fifties, with a non-prescriptive regulatory approach. For any application involving radioactive material, users must be authorised by the Authority, unless the application has demonstrated to be exempted. The licensees are responsible for ensuring protection against the risk associated with exposure to radiation, and for safety of radioactive sources. To obtain an authorisation, the applicant has to prove to the Authority knowledge and capability to carry on an application. Not only normal operation circumstances are considered, but every conceivable accidental situation. It has been shown the existence of radioactive sources not attributed to an authorised user or installation, and therefore outside of the primary control structure described above. These sources, from here on called 'orphans' recognise several origins. The regulatory authority should necessary foresee mechanisms to afford early detection and management of these sources, before an undesired consequence arises. Up to some extent, the deployment of multiple and varied organisations or procedures, could be understood as a 'defence in depth' concept, applied to the control. (author)

Orphan therapies: making best use of postmarket data.

Science.gov (United States)

Maro, Judith C; Brown, Jeffrey S; Dal Pan, Gerald J; Li, Lingling

2014-08-01

Postmarket surveillance of the comparative safety and efficacy of orphan therapeutics is challenging, particularly when multiple therapeutics are licensed for the same orphan indication. To make best use of product-specific registry data collected to fulfill regulatory requirements, we propose the creation of a distributed electronic health data network among registries. Such a network could support sequential statistical analyses designed to detect early warnings of excess risks. We use a simulated example to explore the circumstances under which a distributed network may prove advantageous. We perform sample size calculations for sequential and non-sequential statistical studies aimed at comparing the incidence of hepatotoxicity following initiation of two newly licensed therapies for homozygous familial hypercholesterolemia. We calculate the sample size savings ratio, or the proportion of sample size saved if one conducted a sequential study as compared to a non-sequential study. Then, using models to describe the adoption and utilization of these therapies, we simulate when these sample sizes are attainable in calendar years. We then calculate the analytic calendar time savings ratio, analogous to the sample size savings ratio. We repeat these analyses for numerous scenarios. Sequential analyses detect effect sizes earlier or at the same time as non-sequential analyses. The most substantial potential savings occur when the market share is more imbalanced (i.e., 90% for therapy A) and the effect size is closest to the null hypothesis. However, due to low exposure prevalence, these savings are difficult to realize within the 30-year time frame of this simulation for scenarios in which the outcome of interest occurs at or more frequently than one event/100 person-years. We illustrate a process to assess whether sequential statistical analyses of registry data performed via distributed networks may prove a worthwhile infrastructure investment for pharmacovigilance.

Biosimilars for Haematologic Malignancies: The Path to Sustainable Care

Directory of Open Access Journals (Sweden)

Paul Cornes

2017-08-01

Full Text Available The main objectives of this symposium were to review the value of biosimilars in sustainable treatment for haematologic malignancies and to recognise the developmental differences between biosimilars and their reference products. The meeting also aimed to evaluate the data on monoclonal antibodies for the treatment of haematologic malignancies and the role of biosimilars to address gaps in healthcare. Dr Cornes highlighted recent innovations in cancer treatment and presented biosimilars as economic tools that can address the financial issues that hamper progress. Prof Vulto discussed the need for healthcare professionals to be well informed about the principles of biosimilarity and aware of current and emerging therapies. Prof Jurczak presented the case for rituximab (and its biosimilars as the standard of care for first-line B cell non-Hodgkin’s lymphoma (NHL and its potential as maintenance treatment for indolent NHL (iNHL.

Molecular pharmacological phenotyping of EBI2. An orphan seven-transmembrane receptor with constitutive activity

DEFF Research Database (Denmark)

Rosenkilde, Mette M; Benned-Jensen, Tau; Holst, Peter J

2006-01-01

Epstein-Barr virus (EBV)-induced receptor 2 (EBI2) is an orphan seven-transmembrane (7TM) receptor originally identified as the most up-regulated gene (>200-fold) in EBV-infected cells. Here we show that EBI2 signals with constitutive activity through Galpha(i) as determined by a receptor...

The orphan G protein-coupled receptor GPR139 is activated by the peptides

DEFF Research Database (Denmark)

Jensen, Anne Cathrine Nøhr; Shehata, Mohamed A; Hauser, Alexander S

2017-01-01

GPR139 is an orphan G protein-coupled receptor that is expressed primarily in the brain. Not much is known regarding the function of GPR139. Recently we have shown that GPR139 is activated by the amino acids l-tryptophan and l-phenylalanine (EC50 values of 220 μM and 320 μM, respectively), as well...

Survey of neonatologists' attitudes toward limiting life-sustaining treatments in the neonatal intensive care unit.

Science.gov (United States)

Feltman, D M; Du, H; Leuthner, S R

2012-11-01

To understand neonatologists' attitudes toward end-of-life (EOL) management in clinical scenarios, EOL ethical concepts and resource utilization. American Academy of Pediatrics (AAP) Perinatal section members completed an anonymous online survey. Respondents indicated preferences in limiting life-sustaining treatments in four clinical scenarios, ranked agreement with EOL-care ethics statements, indicated outside resources previously used and provided demographic information. In all, 451 surveys were analyzed. Across clinical scenarios and as general ethical concepts, withdrawal of mechanical ventilation in severely affected patients was most accepted by respondents; withdrawal of artificial nutrition and hydration was least accepted. One-third of neonatologists did not agree that non-initiation of treatment is ethically equivalent to withdrawal. Around 20% of neonatologists would not defer care if uncomfortable with a parent's request. Respondents' resources included ethics committees, AAP guidelines and legal counsel/courts. Challenges to providing just, unified EOL care strategies are discussed, including deferring care, limiting artificial nutrition/hydration and conditions surrounding ventilator withdrawal.

The influence of the European paediatric regulation on marketing authorisation of orphan drugs for children

NARCIS (Netherlands)

Kreeftmeijer-Vegter, Annemarie Rosan; de Boer, Anthonius; van der Vlugt-Meijer, Roselinda H.; de Vries, Peter J.

2014-01-01

Background: Drug development for rare diseases is challenging, especially when these orphan drugs (OD) are intended for children. In 2007 the EU Paediatric Drug Regulation was enacted to improve the development of high quality and ethically researched medicines for children through the establishment

The influence of the European paediatric regulation on marketing authorisation of orphan drugs for children

NARCIS (Netherlands)

Kreeftmeijer-Vegter, Annemarie Rosan; de Boer, Anthonius; van der Vlugt-Meijer, Roselinda H; de Vries, Peter J

2014-01-01

BACKGROUND: Drug development for rare diseases is challenging, especially when these orphan drugs (OD) are intended for children. In 2007 the EU Paediatric Drug Regulation was enacted to improve the development of high quality and ethically researched medicines for children through the establishment

Why orphan drug coverage reimbursement decision-making needs patient and public involvement.

Science.gov (United States)

Douglas, Conor M W; Wilcox, Elizabeth; Burgess, Michael; Lynd, Larry D

2015-05-01

Recently there has been an increase in the active involvement of publics and patients in healthcare and research, which is extending their roles beyond the passive recipients of medicines. However, there has been noticeably less work engaging them into decision-making for healthcare rationing exercises, priority setting, health technology assessment, and coverage decision-making. This is particularly evident in reimbursement decision-making for 'orphan drugs' or drugs for rare diseases. Medicinal products for rare disease offer particular challenges in coverage decision-making because they often lack the 'evidence of efficacy' profiles of common drugs that have been trialed on larger populations. Furthermore, many of these drugs are priced in the high range, and with limited health care budgets the prospective opportunity costs of funding them means that those resources cannot be allocated elsewhere. Here we outline why decision-making for drugs for rare diseases could benefit from increased levels of publics and patients involvement, suggest some possible forms that involvement could take, and advocate for empirical experimentation in this area to evaluate the effects of such involvement. Focus is given to the Canadian context in which we are based; however, potentialities and challenges relating to involvement in this area are likely to be similar elsewhere. Copyright © 2015 Elsevier Ireland Ltd. All rights reserved.

Structural basis for corepressor assembly by the orphan nuclear receptor TLX

OpenAIRE

Zhi, Xiaoyong; Zhou, X. Edward; He, Yuanzheng; Searose-Xu, Kelvin; Zhang, Chun-Li; Tsai, Chih-Cheng; Melcher, Karsten; Xu, H. Eric

2015-01-01

The orphan nuclear receptor TLX regulates neural stem cell self-renewal in the adult brain and functions primarily as a transcription repressor through recruitment of Atrophin corepressors, which bind to TLX via a conserved peptide motif termed the Atro box. Zhi et al. report crystal structures of the human and insect TLX ligand-binding domain in complex with Atro box peptides. Mutations that weaken the TLX–Atrophin interaction compromise the repressive activity of TLX. In addition, mutations...

Orphan chemokine receptors in neuroimmunology : functional and pharmacological analysis of L-CCR and HCR

NARCIS (Netherlands)

Zuurman, Michael Wilhelmer

2003-01-01

In this thesis we have investigated the expression and biological activity of the orphan chemokine receptors L-CCR/HCR in astrocytes and microglia. Several lines of evidence indicate that the chemokines CCL2, CCL5, CCL7 and CCL8 are agonists for these receptors. Although a variety of biological

Veterans Affairs methicillin-resistant Staphylococcus aureus prevention initiative associated with a sustained reduction in transmissions and health care-associated infections.

Science.gov (United States)

Evans, Martin E; Kralovic, Stephen M; Simbartl, Loretta A; Freyberg, Ron W; Obrosky, D Scott; Roselle, Gary A; Jain, Rajiv

2013-11-01

Implementation of a methicillin-resistant Staphylococcus aureus (MRSA) Prevention Initiative was associated with significant declines in MRSA transmission and MRSA health care-associated infection rates in Veterans Affairs acute care facilities nationwide in the 33-month period from October 2007 through June 2010. Here, we show continuing declines in MRSA transmissions (P = .004 for trend, Poisson regression) and MRSA health care-associated infections (P < .001) from July 2010 through June 2012. The Veterans Affairs Initiative was associated with these effects, sustained over 57 months, in a large national health care system. Published by Mosby, Inc.

The perverse impact of external reference pricing (ERP): a comparison of orphan drugs affordability in 12 European countries. A call for policy change

Science.gov (United States)

Young, K. E.; Soussi, I.; Toumi, M.

2017-01-01

ABSTRACT Objective: The study compared the relative cost differences of similar orphan drugs among high and low GDP countries in Europe: Bulgaria, France, Germany, Greece, Hungary, Italy, Norway, Poland, Romania, Spain, Sweden, UK. Methods: Annual treatment costs per patient were calculated. Relative costs were computed by dividing the costs by each economic parameter: nominal GDP per capita, GDP in PPP per capita, % GDP contributed by the government, government budget per inhabitant, % GDP spent on healthcare, % GDP spent on pharmaceuticals, and average annual salary. An international comparison of the relative costs was done using UK as the reference country and results were analysed descriptively. Results: 120 orphan drugs were included. The median annual costs of orphan drugs in all countries varied minimally (cost ratios: 0.87 to 1.08). When the costs were adjusted using GDP per capita, the EU-5 and Nordic countries maintained minimal difference in median cost. However, the lower GDP countries showed three to six times higher relative costs. The same pattern was evident when costs were adjusted using the other economic parameters. Conclusion: When the country’s ability to pay is taken into consideration, lower GDP countries pay relatively higher costs for similarly available orphan drugs in Europe. PMID:29081920

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.

GPR101 orphan GPCR: a novel cause of growth hormone deregulation

OpenAIRE

Abboud, Dayana; Daly, Adrian; Dupuis, Nadine; Laschet, Céline; Geubelle, Pierre; Pirotte, Bernard; BECKERS, Albert; Hanson, Julien

2017-01-01

GPR101 is an orphan G-protein coupled receptor with unknown ligand. In 2014, an international study clearly pointed to a strong association between this receptor and the X-linked acrogigantism (X-LAG) syndrome, which begins in childhood and causes the “tallest giants”. The children (carriers of the GPR101 duplication on the X chromosome) grow abnormally even before they are one year old, secrete phenomenal quantities of growth hormone, and develop pituitary adenomas that do not respond to cur...

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

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.

Orphan nuclear receptor Nur77 participates in human apolipoprotein A5 gene expression

International Nuclear Information System (INIS)

Song, Kwang-Hoon

2010-01-01

The orphan nuclear receptor Nur77 (NR4A1) has been reported to play a crucial role in the modulation of diverse metabolic processes in liver. Here, we reported the identification of human apolipoprotein A5 (ApoA5), which implicated in lowering plasma triglyceride levels, as a novel target gene of Nur77. Nur77 induced the human ApoA5 promoter activity. Using 5'-deletion and mutagenesis of human ApoA5 promoter analysis and chromatin immunoprecipitation assays, it was shown that Nur77 directly regulated human ApoA5 gene expression by binding to a Nur77 response element (AAAGGTCA) located in the proximal human ApoA5 promoter region. In addition, we demonstrated that blocking of Nur77 transcriptional activity via overexpression of dominant negative Nur77 suppressed human ApoA5 promoter activity and mRNA expression in human hepatoma cells, HepG2. Taken together, our results demonstrated that Nur77 is a novel regulator of human ApoA5 gene expression and provide a new insight into the role of this orphan nuclear receptor in lipoprotein metabolism and triglyceride homeostasis.

The Orphan Nuclear Receptor TR4 Is a Vitamin A-activated Nuclear Receptor

Energy Technology Data Exchange (ETDEWEB)

Zhou, X. Edward; Suino-Powell, Kelly M.; Xu, Yong; Chan, Cee-Wah; Tanabe, Osamu; Kruse, Schoen W.; Reynolds, Ross; Engel, James Douglas; Xu, H. Eric (Michigan-Med); (Van Andel)

2015-11-30

Testicular receptors 2 and 4 (TR2/4) constitute a subgroup of orphan nuclear receptors that play important roles in spermatogenesis, lipid and lipoprotein regulation, and the development of the central nervous system. Currently, little is known about the structural features and the ligand regulation of these receptors. Here we report the crystal structure of the ligand-free TR4 ligand binding domain, which reveals an autorepressed conformation. The ligand binding pocket of TR4 is filled by the C-terminal half of helix 10, and the cofactor binding site is occupied by the AF-2 helix, thus preventing ligand-independent activation of the receptor. However, TR4 exhibits constitutive transcriptional activity on multiple promoters, which can be further potentiated by nuclear receptor coactivators. Mutations designed to disrupt cofactor binding, dimerization, or ligand binding substantially reduce the transcriptional activity of this receptor. Importantly, both retinol and retinoic acid are able to promote TR4 to recruit coactivators and to activate a TR4-regulated reporter. These findings demonstrate that TR4 is a ligand-regulated nuclear receptor and suggest that retinoids might have a much wider regulatory role via activation of orphan receptors such as TR4.

Orphan nuclear receptor Nur77 participates in human apolipoprotein A5 gene expression

Energy Technology Data Exchange (ETDEWEB)

Song, Kwang-Hoon, E-mail: ksong@kiom.re.kr [Korea Institute of Oriental Medicine, Daejeon 305-811 (Korea, Republic of)

2010-01-29

The orphan nuclear receptor Nur77 (NR4A1) has been reported to play a crucial role in the modulation of diverse metabolic processes in liver. Here, we reported the identification of human apolipoprotein A5 (ApoA5), which implicated in lowering plasma triglyceride levels, as a novel target gene of Nur77. Nur77 induced the human ApoA5 promoter activity. Using 5'-deletion and mutagenesis of human ApoA5 promoter analysis and chromatin immunoprecipitation assays, it was shown that Nur77 directly regulated human ApoA5 gene expression by binding to a Nur77 response element (AAAGGTCA) located in the proximal human ApoA5 promoter region. In addition, we demonstrated that blocking of Nur77 transcriptional activity via overexpression of dominant negative Nur77 suppressed human ApoA5 promoter activity and mRNA expression in human hepatoma cells, HepG2. Taken together, our results demonstrated that Nur77 is a novel regulator of human ApoA5 gene expression and provide a new insight into the role of this orphan nuclear receptor in lipoprotein metabolism and triglyceride homeostasis.

Sustainability and resilience in midwifery: A discussion paper.

Science.gov (United States)

Crowther, Susan; Hunter, Billie; McAra-Couper, Judith; Warren, Lucie; Gilkison, Andrea; Hunter, Marion; Fielder, Anna; Kirkham, Mavis

2016-09-01

midwifery workforce issues are of international concern. Sustainable midwifery practice, and how resilience is a required quality for midwives, have begun to be researched. How these concepts are helpful to midwifery continues to be debated. It is important that such debates are framed so they can be empowering for midwives. Care is required not to conceptually label matters concerning the midwifery workforce without judicious scrutiny and diligence. the aim of this discussion paper is to explore the concepts of sustainability and resilience now being suggested in midwifery workforce literature. Whether sustainability and resilience are concepts useful in midwifery workforce development is questioned. using published primary midwifery research from United Kingdom and New Zealand the concepts of sustainability and resilience are compared, contrasted and explored. there are obvious differences in models of midwifery care in the United Kingdom and New Zealand. Despite these differences, the concepts of resilience and sustainability emerge as overlapping themes from the respective studies' findings. Comparison between studies provides evidence of what is crucial in sustaining healthy resilient midwifery practice. Four common themes have been identified that traverse the different models of care; Self-determination, ability to self-care, cultivation of relationships both professionally and with women/families, and a passion, joy and love for midwifery. the impact that midwifery models of care may have on sustainable practice and nurturing healthy resilient behaviors remains uncertain. The notion of resilience in midwifery as the panacea to resolve current concerns may need rethinking. Resilience may be interpreted as expecting midwives 'to toughen up' in a workplace setting that is socially, economically and culturally challenging. Sustainability calls for examination of the reciprocity between environments of working and the individual midwife. The findings invite

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

Science.gov (United States)

2013-07-23

... used. Once a hospital is enrolled in 340B, it may change its decision to purchase all orphan drugs... alternative system to tracking each discounted drug through the purchasing and dispensing process. (59 FR... the purchasing and dispensing process, to prove compliance. If an alternate system of tracking is...

Psychosocial Support for Orphans and Vulnerable Children in Public Primary Schools: Challenges and Intervention Strategies

Science.gov (United States)

Mwoma, Teresa; Pillay, Jace

2015-01-01

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 understanding of the challenges…

HIV-Related Cognitive Impairment of Orphans in Myanmar With Vertically Transmitted HIV Taking Antiretroviral Therapy.

Science.gov (United States)

Linn, Kyaw; Fay, Alexander; Meddles, Katherine; Isbell, Sara; Lin, Phyo Nay; Thair, Cho; Heaps, Jodi; Paul, Robert; Mar, Soe Soe

2015-12-01

We determined the effect of perinatally acquired HIV on neurocognition in Myanmar children treated with antiretroviral therapy by comparison to demographically matched seronegative children. Myanmar has one of the highest HIV-1 prevalence rates in Southeast Asia. Studies from other resource-poor countries have shown that HIV-infected children differ in socioeconomic, nutritional and caregiver status compared to normal controls. Some vertically infected orphans in Myanmar reside separately from HIV-uninfected children in separate orphanages, thus the demographic variables of interest are naturally controlled. This study provides a unique evaluation of the neurocognitive effects of HIV in children, with control over key demographic variables. We hypothesized that HIV-infected orphans would perform significantly worse on cognitive indices compared with HIV-negative orphans. A battery of cognitive tests sensitive to HIV-associated impairments in children was administered to 28 perinatally acquired HIV-positive children and 31 HIV-negative children from two orphanages in Myanmar; 21 children from each cohort underwent testing at baseline and again after 12 months. Baseline comparison of the two groups indicated that the HIV-infected children performed poorly across all tests, with significant group differences in executive function, visuospatial reasoning, fine motor dexterity, and visual motor integration. On subsequent testing, both cohorts of children showed improvements across multiple domains, with no significant effect of age at treatment initiation. Our results demonstrate a strong effect of HIV infection on specific neurocognitive deficits in vertically infected children. Understanding viral and host determinants and timing and choice of antiretroviral therapy on cognition will be critical to preventing cognitive impairment of children with HIV. Copyright © 2015 Elsevier Inc. All rights reserved.

Prediction and identification of sequences coding for orphan enzymes using genomic and metagenomic neighbours

DEFF Research Database (Denmark)

Yamada, Takuji; Waller, Alison S.; Raes, Jeroen

2012-01-01

Despite the current wealth of sequencing data, one-third of all biochemically characterized metabolic enzymes lack a corresponding gene or protein sequence, and as such can be considered orphan enzymes. They represent a major gap between our molecular and biochemical knowledge, and consequently a...... Systems Biology 8: 581; published online 8 May 2012; doi:10.1038/msb.2012.13...

SUSTAINABLE BUSINESS COMPETITIVENESS: TRANSLATING CONCEPT INTO PRACTICE

Directory of Open Access Journals (Sweden)

Idqan Fahmi

2012-09-01

Full Text Available Normal 0 false false false EN-US X-NONE X-NONE Globalization has proven to spur economic growth for many countries in the world. It has, however, also negative impacts in terms of widening income gap, environmental degradation etc. such that many are worried that the growth will not be sustainable. Triple bottom line was introduced to make the economic growth and company competitiveness more sustainable. Although to define the concept is easy, to make it implemented, especially by developing countries, is another matter. Education and research track by universities is suggested to be one best way to accelerate the implementation of the concept. A case of Graduate Program of Management and Business (MB-IPB is used to illustrate the attempt.   Keywords: Sustainable Business Competitiveness, Triple Bottom Line, MB-IPB, 3Ps   /* Style Definitions */ table.MsoNormalTable {mso-style-name:"Table Normal"; mso-tstyle-rowband-size:0; mso-tstyle-colband-size:0; mso-style-noshow:yes; mso-style-priority:99; mso-style-qformat:yes; mso-style-parent:""; mso-padding-alt:0cm 5.4pt 0cm 5.4pt; mso-para-margin-top:0cm; mso-para-margin-right:0cm; mso-para-margin-bottom:10.0pt; mso-para-margin-left:0cm; line-height:115%; mso-pagination:widow-orphan; font-size:11.0pt; font-family:"Calibri","sans-serif"; mso-ascii-font-family:Calibri; mso-ascii-theme-font:minor-latin; mso-fareast-font-family:"Times New Roman"; mso-fareast-theme-font:minor-fareast; mso-hansi-font-family:Calibri; mso-hansi-theme-font:minor-latin;}

Adopted orphans as regulators of inflammation, immunity and skeletal homeostasis.

Science.gov (United States)

Ipseiz, Natacha; Scholtysek, Carina; Culemann, Stephan; Krönke, Gerhard

2014-01-01

Adopted orphan nuclear receptors, such as peroxisome proliferator-activated receptors (PPARs) and liver X receptors (LXRs), have emerged as key regulators of inflammation and immunity and likewise control skeletal homeostasis. These properties render them attractive targets for the therapy of various inflammatory and autoimmune diseases affecting the musculoskeletal system. This review summarises the current knowledge on the role of these families of receptors during innate and adaptive immunity as well as during the control of bone turnover and discuss the potential use of targeting these molecules during the treatment of chronic diseases such as osteoarthritis, rheumatoid arthritis and osteoporosis.

Care ‘going market’: Finnish elderly-care policies in transition

Directory of Open Access Journals (Sweden)

Anneli Anttonen

2011-06-01

Full Text Available Normal 0 21 false false false NO-BOK X-NONE X-NONE MicrosoftInternetExplorer4 /* Style Definitions */ table.MsoNormalTable {mso-style-name:"Vanlig tabell"; mso-tstyle-rowband-size:0; mso-tstyle-colband-size:0; mso-style-noshow:yes; mso-style-priority:99; mso-style-qformat:yes; mso-style-parent:""; mso-padding-alt:0cm 5.4pt 0cm 5.4pt; mso-para-margin:0cm; mso-para-margin-bottom:.0001pt; mso-pagination:widow-orphan; font-size:11.0pt; font-family:"Calibri","sans-serif"; mso-ascii-font-family:Calibri; mso-ascii-theme-font:minor-latin; mso-fareast-font-family:"Times New Roman"; mso-fareast-theme-font:minor-fareast; mso-hansi-font-family:Calibri; mso-hansi-theme-font:minor-latin; mso-bidi-font-family:"Times New Roman"; mso-bidi-theme-font:minor-bidi;} Normal 0 21 false false false NO-BOK X-NONE X-NONE MicrosoftInternetExplorer4 /* Style Definitions */ table.MsoNormalTable {mso-style-name:"Vanlig tabell"; mso-tstyle-rowband-size:0; mso-tstyle-colband-size:0; mso-style-noshow:yes; mso-style-priority:99; mso-style-qformat:yes; mso-style-parent:""; mso-padding-alt:0cm 5.4pt 0cm 5.4pt; mso-para-margin:0cm; mso-para-margin-bottom:.0001pt; mso-pagination:widow-orphan; font-size:11.0pt; font-family:"Calibri","sans-serif"; mso-ascii-font-family:Calibri; mso-ascii-theme-font:minor-latin; mso-fareast-font-family:"Times New Roman"; mso-fareast-theme-font:minor-fareast; mso-hansi-font-family:Calibri; mso-hansi-theme-font:minor-latin; mso-bidi-font-family:"Times New Roman"; mso-bidi-theme-font:minor-bidi;} Normal 0 false false false EN-GB X-NONE X-NONE /* Style Definitions */ table.MsoNormalTable {mso-style-name:"Vanlig tabell"; mso-tstyle-rowband-size:0; mso-tstyle-colband-size:0; mso-style-noshow:yes; mso-style-priority:99; mso-style-qformat:yes; mso-style-parent:""; mso-padding-alt:0cm 5.4pt 0cm 5.4pt; mso-para-margin:0cm; mso-para-margin-bottom:.0001pt; mso-pagination:widow-orphan; font-size:11.0pt; font-family:"Calibri","sans-serif"; mso

Legal Briefing: Adult Orphans and the Unbefriended: Making Medical Decisions for Unrepresented Patients without Surrogates.

Science.gov (United States)

Pope, Thaddeus Mason

2015-01-01

This issue's "Legal Briefing" column covers recent legal developments involving medical decision making for incapacitated patients who have no available legally authorized surrogate decision maker. These individuals are frequently referred to either as "adult orphans" or as "unbefriended," "isolated," or "unrepresented" patients. The challenges involved in obtaining consent for medical treatment on behalf of these individuals have been the subject of major policy reports. Indeed, caring for the unbefriended has even been described as the "single greatest category of problems" encountered in bioethics consultation. In 2012, JCE published a comprehensive review of the available mechanisms by which to make medical decisions for the unbefriended. The purpose of this "Legal Briefing" is to update the 2012 study. Accordingly, this "Legal Briefing" collects and describes significant legal developments from only the past three years. My basic assessment has not changed. "Existing mechanisms to address the issue of decision making for the unbefriended are scant and not uniform." Most facilities are "muddling through on an ad hoc basis." But the situation is not wholly negative. There have been a number of promising new initiatives. I group these developments into the following seven categories: 1. Increased Attention and Discussion 2. Prevention through Better Advance Care Planning 3. Prevention through Expanded Default Surrogate Lists 4. Statutorily Authorized Intramural Mechanisms 5. California Litigation Challenging the Team Approach 6. Public Guardianship 7. Improving Existing Guardianship Processes. Copyright 2015 The Journal of Clinical Ethics. All rights reserved.

How to calculate the annual costs of NGO-implemented programmes to support orphans and vulnerable children: a six-step approach.

Science.gov (United States)

Larson, Bruce A; Wambua, Nancy

2011-12-19

Information on the costs of implementing programmes designed to provide support of orphans and vulnerable children (OVC) in sub-Saharan Africa and elsewhere is increasingly being requested by donors for programme evaluation purposes. To date, little information exists to document the costs and structure of costs of OVC programmes as actually implemented "on the ground" by local non-governmental organizations (NGOs). This analysis provides a practical, six-step approach that NGOs can incorporate into routine operations to evaluate their costs of implementing their OVC programmes annually. This approach is applied to the Community-Based Care for Orphans and Vulnerable Children (CBCO) Program implemented by BIDII (a Kenyan NGO) in Eastern Province of Kenya. The costing methodology involves the following six steps: accessing and organizing the NGO's annual financial report into logical sub-categories; reorganizing the sub-categories into input cost categories to create a financial cost profile; estimating the annual equivalent payment for programme equipment; documenting donations to the NGO for programme implementation; including a portion of NGO organizational costs not attributed to specific programmes; and including the results of Steps 3-5 into an expanded cost profile. Detailed results are provided for the CBCO programme. This paper shows through a concrete example how NGOs implementing OVC programmes (and other public health programmes) can organize themselves for data collection and documentation prospectively during the implementation of their OVC programmes so that costing analyses become routine practice to inform programme implementation rather than a painful and flawed retrospective activity. Such information is required if the costs and outcomes achieved by OVC programmes will ever be clearly documented and compared across OVC programmes and other types of programmes (prevention, treatment, etc.).

Orphan Sources and Fresh Fallout: Virtual Exercise in Mobile Measurement (ORPEX)

International Nuclear Information System (INIS)

Dowdall, M.; Smethurst, M.A.; Andersson, K.; Aage, H.K.; Palsson, S.E.

2011-10-01

In recent years carborne gamma spectrometry has expanded from its role as a geological survey platform to serving as a useful asset in the field of emergency response to radiological and nuclear situations. Its two main applications are searching for orphan sources and for surveying in the aftermath of an accident involving the release of radioactive materials. Despite this expansion, the opportunities for gaining practical experience in the field are limited by cost considerations and practicability. These limitations are exacerbated by the fact that data generated and displayed in the field differ significantly from gamma spectral data generated in a laboratory environment. As a means of exercising existing emergency measuring/surveying capability and introducing carborne measurements to a larger group, a virtual exercise was devised. The exercise ORPEX (Orphan Sources and Fresh Fallout Virtual Exercise in Mobile Measurement) featured two typical emergency scenarios in which carborne measuring systems might be deployed: firstly a search for multiple orphan sources and secondly surveying to delineate patchy fallout from a local release point. In the first scenario, synthetic spectral data were generated for imaginary point sources and inserted into genuine carborne measurements from in the Trondheim area of Norway. Participants were presented with a typical software tool and data in a range of typical formats and asked to report the source locations and isotopes within a time limit. In the second scenario, synthetic spectral data representing fallout from a local fire involving radioactive material were added to real carborne data from the Trondheim area. Participants were asked to produce maps that identify and characterise the regions of contamination within the same time limit. Fourteen individual organisations from seven different countries supplied results. Results from participants indicate that for strong sources of isotopes with simple spectra featuring

Orphan Sources and Fresh Fallout: Virtual Exercise in Mobile Measurement (ORPEX)

Energy Technology Data Exchange (ETDEWEB)

Dowdall, M. (Norwegian Radiation Protection Authority, OEsteraas (Norway)); Smethurst, M.A. (Univ. of Exeter and Avalonia Geophysics, Cornwall Campus, Penryn (United Kingdom)); Andersson, K. (Technical Univ. of Denmark. Risoe National Lab. for Sustainable Energy, Roskilde (Denmark)); Aage, H.K. (Danish Emergency Management Agency, Birkeroed (Denmark)); Palsson, S.E. (Icelandic Radiation Protection Institute, Reykjavik (Iceland))

2011-10-15

In recent years carborne gamma spectrometry has expanded from its role as a geological survey platform to serving as a useful asset in the field of emergency response to radiological and nuclear situations. Its two main applications are searching for orphan sources and for surveying in the aftermath of an accident involving the release of radioactive materials. Despite this expansion, the opportunities for gaining practical experience in the field are limited by cost considerations and practicability. These limitations are exacerbated by the fact that data generated and displayed in the field differ significantly from gamma spectral data generated in a laboratory environment. As a means of exercising existing emergency measuring/surveying capability and introducing carborne measurements to a larger group, a virtual exercise was devised. The exercise ORPEX (Orphan Sources and Fresh Fallout Virtual Exercise in Mobile Measurement) featured two typical emergency scenarios in which carborne measuring systems might be deployed: firstly a search for multiple orphan sources and secondly surveying to delineate patchy fallout from a local release point. In the first scenario, synthetic spectral data were generated for imaginary point sources and inserted into genuine carborne measurements from in the Trondheim area of Norway. Participants were presented with a typical software tool and data in a range of typical formats and asked to report the source locations and isotopes within a time limit. In the second scenario, synthetic spectral data representing fallout from a local fire involving radioactive material were added to real carborne data from the Trondheim area. Participants were asked to produce maps that identify and characterise the regions of contamination within the same time limit. Fourteen individual organisations from seven different countries supplied results. Results from participants indicate that for strong sources of isotopes with simple spectra featuring

Improving patient care by making small sustainable changes: a cardiac telemetry unit's experience.

Science.gov (United States)

Braaten, Jane S; Bellhouse, Dorothy E

2007-01-01

With the introduction of each new drug, technology, and regulation, the processes of care become more complicated, creating an elaborate set of procedures connecting various hospital units and departments. Using methods of Adaptive Design and the Toyota Production System, a nursing unit redesigned work systems to achieve sustainable improvements in productivity, staff and patient satisfaction, and quality outcomes. The first hurdle of redesign was identifying problems, to which staff had become so accustomed with various work arounds that they had trouble seeing the process bottlenecks. Once the staff identified problems, they assumed they could solve the problem because they assumed they knew the causes. Utilizing root cause analysis, asking, "why, why, why," was essential to unearthing the true cause of a problem. Similarly, identifying solutions that were simple and low cost was an essential step in problem solving. Adopting new procedures and sustaining the commitment to identify and signal problems was a last and critical step toward realizing improvement, requiring a manager to function as "teacher/coach" rather than "fixer/firefighter".

HER2 Deregulation in Lung Cancer: Right Time to Adopt an Orphan?

Science.gov (United States)

Cappuzzo, Federico; Landi, Lorenza

2018-06-01

HER2 -deregulated non-small cell lung cancer is an orphan of any specific therapy, probably because of lack of both accurate patient selection and effective drugs. Recent evidence suggests that osimertinib could be effective in HER2 -amplified or mutated lung cancer as a single agent or in combination. Clin Cancer Res; 24(11); 2470-2. ©2018 AACR See related article by Liu et al., p. 2594 . ©2018 American Association for Cancer Research.

Evaluating the Sustainability of School-Based Health Centers.

Science.gov (United States)

Navarro, Stephanie; Zirkle, Dorothy L; Barr, Donald A

2017-01-01

The United States is facing a surge in the number of school-based health centers (SBHCs) owing to their success in delivering positive health outcomes and increasing access to care. To preserve this success, experts have developed frameworks for creating sustainable SBHCs; however, little research has affirmed or added to these models. This research seeks to analyze elements of sustainability in a case study of three SBHCs in San Diego, California, with the purpose of creating a research-based framework of SBHC sustainability to supplement expertly derived models. Using a mixed methods study design, data were collected from interviews with SBHC stakeholders, observations in SBHCs, and SBHC budgets. A grounded theory qualitative analysis and a quantitative budget analysis were completed to develop a theoretical framework for the sustainability of SBHCs. Forty-one interviews were conducted, 6 hours of observations were completed, and 3 years of SBHC budgets were analyzed to identify care coordination, community buy-in, community awareness, and SBHC partner cooperation as key themes of sustainability promoting patient retention for sustainable billing and reimbursement levels. These findings highlight the unique ways in which SBHCs gain community buy-in and awareness by becoming trusted sources of comprehensive and coordinated care within communities and among vulnerable populations. Findings also support ideas from expert models of SBHC sustainability calling for well-defined and executed community partnerships and quality coordinated care in the procurement of sustainable SBHC funding.

Sustained improvements in peripheral venous catheter care in non-intensive care units: a quasi-experimental controlled study of education and feedback.

Science.gov (United States)

Fakih, Mohamad G; Jones, Karen; Rey, Janice E; Berriel-Cass, Dorine; Kalinicheva, Tatyana; Szpunar, Susanna; Saravolatz, Louis D

2012-05-01

Peripheral venous catheters (PVCs) can be associated with serious infectious complications. We evaluated the effect of education and feedback on process measures to improve PVC care and infectious complications. Quasi-experimental controlled crossover study with sampling before and after education. An 804-bed tertiary care teaching hospital. Nurses and patients in 10 non-intensive care units. We implemented a process to improve PVC care in 10 non-intensive care units. The 4 periods (each 3 months in duration) included a preintervention period and a staggered educational intervention among nurses. During intervention period 1, 5 units participated in the intervention (group A), and 5 units served as a control group (group B). Group B underwent the intervention during intervention period 2, and both groups A and B received feedback on performance during intervention period 3. Process measures were evaluated twice monthly, and feedback was given to nurses directly and to the unit manager on a monthly basis. During the preintervention period, there were no significant differences between groups A and B. Of 4,904 intravascular catheters evaluated, 4,434 (90.4%) were peripheral. By the end of the study, there were significant improvements in processes, compared with the preintervention period, including accurate documentation of dressing (from 442 cases [38%] to 718 cases [59%]; P feedback to nurses increases and sustains compliance with processes to reduce the risk of infection from PVCs.

The Riks-Stroke story: building a sustainable national register for quality assessment of stroke care.

Science.gov (United States)

Asplund, Kjell; Hulter Åsberg, Kerstin; Appelros, Peter; Bjarne, Daniela; Eriksson, Marie; Johansson, Asa; Jonsson, Fredrik; Norrving, Bo; Stegmayr, Birgitta; Terént, Andreas; Wallin, Sari; Wester, Per-Olov

2011-04-01

Riks-Stroke, the Swedish Stroke Register, is the world's longest-running national stroke quality register (established in 1994) and includes all 76 hospitals in Sweden admitting acute stroke patients. The development and maintenance of this sustainable national register is described. Riks-Stroke includes information on the quality of care during the acute phase, rehabilitation and secondary prevention of stroke, as well as data on community support. Riks-Stroke is unique among stroke quality registers in that patients are followed during the first year after stroke. The data collected describe processes, and medical and patient-reported outcome measurements. The register embraces most of the dimensions of health-care quality (evidence-based, safe, provided in time, distributed fairly and patient oriented). Annually, approximately 25,000 patients are included. In 2009, approximately 320,000 patients had been accumulated (mean age 76-years). The register is estimated to cover 82% of all stroke patients treated in Swedish hospitals. Among critical issues when building a national stroke quality register, the delicate balance between simplicity and comprehensiveness is emphasised. Future developments include direct transfer of data from digital medical records to Riks-Stroke and comprehensive strategies to use the information collected to rapidly implement new evidence-based techniques and to eliminate outdated methods in stroke care. It is possible to establish a sustainable quality register for stroke at the national level covering all hospitals admitting acute stroke patients. Riks-Stroke is fulfilling its main goals to support continuous quality improvement of Swedish stroke services and serve as an instrument for following up national stroke guidelines. © 2010 The Authors. International Journal of Stroke © 2010 World Stroke Organization.

Using constitutive activity to define appropriate high-throughput screening assays for orphan g protein-coupled receptors.

Science.gov (United States)

Ngo, Tony; Coleman, James L J; Smith, Nicola J

2015-01-01

Orphan G protein-coupled receptors represent an underexploited resource for drug discovery but pose a considerable challenge for assay development because their cognate G protein signaling pathways are often unknown. In this methodological chapter, we describe the use of constitutive activity, that is, the inherent ability of receptors to couple to their cognate G proteins in the absence of ligand, to inform the development of high-throughput screening assays for a particular orphan receptor. We specifically focus on a two-step process, whereby constitutive G protein coupling is first determined using yeast Gpa1/human G protein chimeras linked to growth and β-galactosidase generation. Coupling selectivity is then confirmed in mammalian cells expressing endogenous G proteins and driving accumulation of transcription factor-fused luciferase reporters specific to each of the classes of G protein. Based on these findings, high-throughput screening campaigns can be performed on the already miniaturized mammalian reporter system.

Characterization of radioactive orphan sources by gamma spectrometry; Caracterizacion de fuentes huerfanas radiactivas por espectrometria gamma

Energy Technology Data Exchange (ETDEWEB)

Cruz W, H., E-mail: wcruz@ipen.gob.pe [Instituto Peruano de Energia Nuclear (PGRR/IPEN), Lima (Peru). Planta de Gestion de Residuos Radiactivos

2013-07-01

The sealed radioactive sources are widely applicable in industry. They must have a permanent control and must be registered with the Technical Office of the National Authority (OTAN). However, at times it has identified the presence of abandoned sealed sources unknown to the owner. These sources are called 'orphan sources'. Of course these sources represent a high potential risk because accidents can trigger dire consequences depending on your activity and chemical form in which it presents the radioisotope. This paper describes the process and the actions taken to characterize two orphan radioactive sources from the smelter a Aceros Arequipa. For characterization we used a gamma spectrometry system using a detector NaI(Tl) 3″ x 3″ with a multichannel analyzer Nucleus PCA-II. The radioisotope identified was cesium - 137 ({sup 137}Cs) in both cases. Fortunately, the sources maintained their integrity would otherwise have generated significant pollution considering the chemical form of the radioisotope and easy dispersion. (author)

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).

Making Good on a Promise: The Education of Civil War Orphans in Pennsylvania, 1863-1893

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Bair, Sarah D.

2011-01-01

During and after the American Civil War, individual state governments, faced with numerous economic demands, struggled to meet the needs of soldiers and their families. Among other pressing questions, they had to decide what to do with the massive number of dependent children orphaned by the war. In order to protect children, it became more…

Project IMPACT: a report on barriers and facilitators to sustainability.

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Blasinsky, Margaret; Goldman, Howard H; Unützer, Jürgen

2006-11-01

Project IMPACT is a collaborative care intervention to assist older adults suffering from major depressive disorder or dysthymia. Qualitative research methods were used to determine the barriers and facilitators to sustaining IMPACT in a primary care setting. Strong evidence supports the program's sustainability, but considerable variation exists in continuation strategies and operationalization across sites. Sustainability depended on the organizations' support of collaborative care models, the availability of staff trained in the intervention, and funding. The intervention's success was the most important sustainability factor, as documented by outcome data and through the "real world" experience of treating patients with this intervention.

Public strategies for improving eHealth integration and long‐term sustainability in public health care systems: Findings from an Italian case study

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Nuti, Sabina

2017-01-01

Summary 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. PMID:28791771

Next generation DNA sequencing technology delivers valuable genetic markers for the genomic orphan legume species, Bituminaria bituminosa

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Pazos-Navarro María

2011-12-01

Full Text Available Abstract Background Bituminaria bituminosa is a perennial legume species from the Canary Islands and Mediterranean region that has potential as a drought-tolerant pasture species and as a source of pharmaceutical compounds. Three botanical varieties have previously been identified in this species: albomarginata, bituminosa and crassiuscula. B. bituminosa can be considered a genomic 'orphan' species with very few genomic resources available. New DNA sequencing technologies provide an opportunity to develop high quality molecular markers for such orphan species. Results 432,306 mRNA molecules were sampled from a leaf transcriptome of a single B. bituminosa plant using Roche 454 pyrosequencing, resulting in an average read length of 345 bp (149.1 Mbp in total. Sequences were assembled into 3,838 isotigs/contigs representing putatively unique gene transcripts. Gene ontology descriptors were identified for 3,419 sequences. Raw sequence reads containing simple sequence repeat (SSR motifs were identified, and 240 primer pairs flanking these motifs were designed. Of 87 primer pairs developed this way, 75 (86.2% successfully amplified primarily single fragments by PCR. Fragment analysis using 20 primer pairs in 79 accessions of B. bituminosa detected 130 alleles at 21 SSR loci. Genetic diversity analyses confirmed that variation at these SSR loci accurately reflected known taxonomic relationships in original collections of B. bituminosa and provided additional evidence that a division of the botanical variety bituminosa into two according to geographical origin (Mediterranean region and Canary Islands may be appropriate. Evidence of cross-pollination was also found between botanical varieties within a B. bituminosa breeding programme. Conclusions B. bituminosa can no longer be considered a genomic orphan species, having now a large (albeit incomplete repertoire of expressed gene sequences that can serve as a resource for future genetic studies. This

Availability of and access to orphan drugs: an international comparison of pharmaceutical treatments for pulmonary arterial hypertension, Fabry disease, hereditary angioedema and chronic myeloid leukaemia.

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Blankart, Carl Rudolf; Stargardt, Tom; Schreyögg, Jonas

2011-01-01

Market authorization does not guarantee patient access to any given drug. This is particularly true for costly orphan drugs because access depends primarily on co-payments, reimbursement policies and prices. The objective of this article is to identify differences in the availability of orphan drugs and in patient access to them in 11 pharmaceutical markets: Australia, Canada, England, France, Germany, Hungary, the Netherlands, Poland, Slovakia, Switzerland and the US. Four rare diseases were selected for analysis: pulmonary arterial hypertension (PAH), Fabry disease (FD), hereditary angioedema (HAE) and chronic myeloid leukaemia (CML). Indicators for availability were defined as (i) the indications for which orphan drugs had been authorized in the treatment of these diseases; (ii) the application date; and (iii) the date upon which these drugs received market authorization in each country. Indicators of patient access were defined as (i) the outcomes of technology appraisals; (ii) the extent of coverage provided by healthcare payers; and (iii) the price of the drugs in each country. For PAH we analysed bosentan, iloprost, sildenafil, treprostinil (intravenous and inhaled) as well as sitaxentan and ambrisentan; for FD we analysed agalsidase alfa and agalsidase beta; for HAE we analysed icatibant, ecallantide and two complement C1s inhibitors; for CML we analysed imatinib, dasatinib and nilotinib. Most drugs included in this study had received market authorization in all countries, but the range of indications for which they had been authorized differed by country. The broadest range of indications was found in Australia, and the largest variations in indications were found for PAH drugs. Authorization process speed (the time between application and market authorization) was fastest in the US, with an average of 362 days, followed by the EU (394 days). The highest prices for the included drugs were found in Germany and the US, and the lowest in Canada, Australia and

Elucidation of primary metabolic pathways in Aspergillus species: orphaned research in characterizing orphan genes.

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Andersen, Mikael Rørdam

2014-11-01

Primary metabolism affects all phenotypical traits of filamentous fungi. Particular examples include reacting to extracellular stimuli, producing precursor molecules required for cell division and morphological changes as well as providing monomer building blocks for production of secondary metabolites and extracellular enzymes. In this review, all annotated genes from four Aspergillus species have been examined. In this process, it becomes evident that 80-96% of the genes (depending on the species) are still without verified function. A significant proportion of the genes with verified metabolic functions are assigned to secondary or extracellular metabolism, leaving only 2-4% of the annotated genes within primary metabolism. It is clear that primary metabolism has not received the same attention in the post-genomic area as many other research areas--despite its role at the very centre of cellular function. However, several methods can be employed to use the metabolic networks in tandem with comparative genomics to accelerate functional assignment of genes in primary metabolism. In particular, gaps in metabolic pathways can be used to assign functions to orphan genes. In this review, applications of this from the Aspergillus genes will be examined, and it is proposed that, where feasible, this should be a standard part of functional annotation of fungal genomes. © The Author 2014. Published by Oxford University Press.

A model of sustainable development of scientific research health institutions, providing high-tech medical care

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I. Yu. Bedoreva

2017-01-01

Full Text Available The issue of sustainability is relevant for all types of businesses and organizations. Long-term development has always been and remains one of the most difficult tasks faced by organizations. The implementation the provisions of international standards ISO series 9000 has proven to be effective. The ISO standards are concentrated on the global experience for sustainable success of organizations. The standards incorporated all the rational that has been accumulated in this field of knowledge and practice. These standards not only eliminate technical barriers in collaboration and have established standardized approaches, but also serve as a valuable source of international experience and ready management solutions. They became a practical guide for the creation of management systems for sustainable development in organizations of different spheres of activity.Problem and purpose. The article presents the author’s approach to the problem of sustainable development health of the organization. The purpose of this article is to examine the approaches to management for sustainable success of organizations and to describe a model of sustainable development applied in research healthcare institutions providing high-tech medical care.Methodology. The study used general scientific methods of empirical and theoretical knowledge, general logical methods and techniques and methods of system analysis, comparison, analogy, generalization, the materials research for the development of medical organizations.The main results of our work are to first develop the technique of complex estimation of activity of the scientific-research institutions of health and deploy key elements of the management system that allows the level of maturity of the management system of the institution to be set in order to identify its strengths and weaknesses, and to identify areas for improvements and innovation, and to set priorities for determining the sequence of action when

Predictors of Sustained Walking among Diabetes Patients in Managed Care: The Translating Research into Action for Diabetes (TRIAD) Study

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Gerzoff, Robert B.; Brown, Arleen F.; Karter, Andrew J.; Kim, Catherine; Kountz, David; Narayan, K. M. Venkat; Schneider, Stephen H.; Tseng, Chien-Wen; Waitzfelder, Beth; Mangione, Carol M.

2008-01-01

BACKGROUND Although patients with diabetes may benefit from physical activity, few studies have examined sustained walking in this population. OBJECTIVE To examine the factors associated with sustained walking among managed care patients with diabetes. DESIGN Longitudinal, observational cohort study with questionnaires administered 2.5 years apart. PARTICIPANTS Five thousand nine hundred thirty-five patients with diabetes walking at least 20 minutes/day at baseline. MEASUREMENTS The primary outcome was the likelihood of sustained walking, defined as walking at least 20 minutes/day at follow-up. We evaluated a logistic regression model that included demographic, clinical, and neighborhood variables as independent predictors of sustained walking, and expressed the results as predicted percentages. RESULTS The absence of pain was linked to walking behavior, as 62% of patients with new pain, 67% with ongoing pain, and 70% without pain were still walking at follow-up (p = .03). Obese patients were less likely (65%) to sustain walking than overweight (71%) or normal weight (70%) patients (p = .03). Patients ≥65 years (63%) were less likely to sustain walking than patients between 45 and 64 (70%) or ≤44 (73%) years (p = .04). Only 62% of patients with a new comorbidity sustained walking compared with 68% of those who did not (p walking in this cohort of active walkers. CONCLUSIONS Pain, obesity, and new comorbidities were moderately associated with decreases in sustained walking. Whereas controlled intervention studies are needed, prevention, or treatment of these adverse conditions may help patients with diabetes sustain walking behavior. PMID:18452046

Who Really Cares About Higher Education For Sustainable Development?

OpenAIRE

Torsten Richter; Kim P. Schumacher

2011-01-01

Problem statement: It is agreed that integrating Higher Education for Sustainable Development (HESD) into the curricula of universities is of key importance to disseminate the idea of sustainability. Especially the curricula of teacher-training should contain elements of Education for Sustainable Development (ESD) due to the crucial role of future teachers in information propagation. Approach: In order to find out about the spreading of ESD into the curricula and whether or not it is of inter...

Orphan sources: Consequences, regaining control and learning the lessons