Controlling patient participation during robot-assisted gait training

Science.gov (United States)

2011-01-01

Background The overall goal of this paper was to investigate approaches to controlling active participation in stroke patients during robot-assisted gait therapy. Although active physical participation during gait rehabilitation after stroke was shown to improve therapy outcome, some patients can behave passively during rehabilitation, not maximally benefiting from the gait training. Up to now, there has not been an effective method for forcing patient activity to the desired level that would most benefit stroke patients with a broad variety of cognitive and biomechanical impairments. Methods Patient activity was quantified in two ways: by heart rate (HR), a physiological parameter that reflected physical effort during body weight supported treadmill training, and by a weighted sum of the interaction torques (WIT) between robot and patient, recorded from hip and knee joints of both legs. We recorded data in three experiments, each with five stroke patients, and controlled HR and WIT to a desired temporal profile. Depending on the patient's cognitive capabilities, two different approaches were taken: either by allowing voluntary patient effort via visual instructions or by forcing the patient to vary physical effort by adapting the treadmill speed. Results We successfully controlled patient activity quantified by WIT and by HR to a desired level. The setup was thereby individually adaptable to the specific cognitive and biomechanical needs of each patient. Conclusion Based on the three successful approaches to controlling patient participation, we propose a metric which enables clinicians to select the best strategy for each patient, according to the patient's physical and cognitive capabilities. Our framework will enable therapists to challenge the patient to more activity by automatically controlling the patient effort to a desired level. We expect that the increase in activity will lead to improved rehabilitation outcome. PMID:21429200

Patient/client participation – adaptability into the system?

DEFF Research Database (Denmark)

Glasdam, Stinne; Kjær, Lone; Præstegaard, Jeanette

Through the last 35 years "patient/client involvement" have been a mantra within health policies and stated objectives in education curriculums and institutional object clauses; - although different terms are used: "patient-centered", "inclusion", "participation", "influence", "respect for patient...

Communication and patient participation influencing patient recall of treatment discussions.

Science.gov (United States)

Richard, Claude; Glaser, Emma; Lussier, Marie-Thérèse

2017-08-01

Patient recall of treatment information is a key variable towards chronic disease (CD) management. It is unclear what communication and patient participation characteristics predict recall. To assess what aspects of doctor-patient communication predict patient recall of medication information. To describe lifestyle treatment recall, in CD primary care patients. Observational study within a RCT. Community-based primary care (PC) practices. Family physicians (n=18): practicing >5 years, with a CD patient caseload. Patients (n=159): >40 years old, English speaking, computer literate, off-target hypertension, type II diabetes and/or dyslipidaemia. Patient characteristics: age, education, number of CDs. Information characteristics: length of encounter, medication status, medication class. Communication variables: socio-emotional utterances, physician dominance and communication control scores and PACE (ask, check and express) utterances, measured by RIAS. Number of medication themes, dialogue and initiative measured by MEDICODE. Recall of CD, lifestyle treatment and medication information. Frequency of lifestyle discussions varied by topic. Patients recalled 43% (alcohol), 52% (diet) to 70% (exercise) of discussions. Two and a half of six possible medication themes were broached per medication discussion. Less than one was recalled. Discussing more themes, greater dialogue and patient initiative were significant predictors of improved medication information recall. Critical treatment information is infrequently exchanged. Active patient engagement and explicit conversations about medications are associated with improved treatment information recall in off-target CD patients followed in PC. Providers cannot take for granted that long-term off-target CD patients recall information. They need to encourage patient participation to improve recall of treatment information. © 2016 The Authors. Health Expectations Published by John Wiley & Sons Ltd.

Patient participation in collective healthcare decision making: the Dutch model

NARCIS (Netherlands)

van de Bovenkamp, H.; Trappenburg, M.J.; Grit, K.

2010-01-01

Objective To study whether the Dutch participation model is a good model of participation. Background Patient participation is on the agenda, both on the individual and the collective level. In this study, we focus on the latter by looking at the Dutch model in which patient organizations are

Patient participation in collective healthcare decision making: the Dutch model

NARCIS (Netherlands)

van de Bovenkamp, H.M.; Trappenburg, M.J.; Grit, K.J.

2010-01-01

Objective  To study whether the Dutch participation model is a good model of participation. Background  Patient participation is on the agenda, both on the individual and the collective level. In this study, we focus on the latter by looking at the Dutch model in which patient organizations are

Patient participation in collective healthcare decision making: the Dutch model

NARCIS (Netherlands)

Bovenkamp, H. van de; Trappenburg, M.J.; Grit, K. J.

2009-01-01

Objective To study whether the Dutch participation model is a good model of participation. Background Patient participation is on the agenda, both on the individual and the collective level. In this study, we focus on the latter by looking at the Dutch model in which patient organizations are

Patients' Perceptions of Nurses' Behaviour That Influence Patient Participation in Nursing Care: A Critical Incident Study

Directory of Open Access Journals (Sweden)

Inga E. Larsson

2011-01-01

Full Text Available Patient participation is an important basis for nursing care and medical treatment and is a legal right in many Western countries. Studies have established that patients consider participation to be both obvious and important, but there are also findings showing the opposite and patients often prefer a passive recipient role. Knowledge of what may influence patients' participation is thus of great importance. The aim was to identify incidents and nurses' behaviours that influence patients' participation in nursing care based on patients' experiences from inpatient somatic care. The Critical Incident Technique (CIT was employed. Interviews were performed with patients (=17, recruited from somatic inpatient care at an internal medical clinic in West Sweden. This study provided a picture of incidents, nurses' behaviours that stimulate or inhibit patients' participation, and patient reactions on nurses' behaviours. Incidents took place during medical ward round, nursing ward round, information session, nursing documentation, drug administration, and meal.

Assessing Patient Participation in Health Policy Decision-Making in Cyprus.

Science.gov (United States)

Souliotis, Kyriakos; Agapidaki, Eirini; Peppou, Lily Evangelia; Tzavara, Chara; Samoutis, George; Theodorou, Mamas

2016-06-20

Although the importance of patient participation in the design and evaluation of health programs and services is well-documented, there is scarcity of research with regard to patient association (PA) participation in health policy decision-making processes. To this end, the present study aimed to validate further a previously developed instrument as well as to investigate the degree of PA participation in health policy decision-making in Cyprus. A convenient sample of 114 patients-members of patients associations took part in the study. Participants were recruited from an umbrella organization, the Pancyprian Federation of Patient Associations and Friends (PFPA). PA participation in health policy decision-making was assessed with the Health Democracy Index (HDI), an original 8-item tool. To explore its psychometric properties, Cronbach α was computed as regards to its internal consistency, while its convergent validity was tested against a self-rated question enquiring about the degree of PA participation in health policy decision-making. The findings revealed that the HDI has good internal consistency and convergent validity. Furthermore, PAs were found to participate more in consultations in health-related organizations and the Ministry of Health (MoH) as well as in reforms or crucial decisions in health policy. Lower levels were documented with regard to participation in hospital boards, ethics committees in clinical trials and health technology assessment (HTA) procedures. Overall, PA participation levels were found to be lower than the mid-point of the scale. Targeted interventions aiming to facilitate patients' involvement in health policy decision-making processes and to increase its impact are greatly needed in Cyprus. © 2016 by Kerman University of Medical Sciences.

The ward round--patient experiences and barriers to participation.

Science.gov (United States)

Swenne, Christine Leo; Skytt, Bernice

2014-06-01

Patients' participation is essential to their well-being and sense of coherence, as well as to their understanding of and adherence to prescribed treatments. Ward rounds serve as a forum for sharing information between patient and caregiver. The purpose of the ward round is to obtain information and plan medical and nursing care through staff-patient communication. The aim and objective of this study was to investigate patients' experiences during the ward round and their ability to participate in their care. The study was qualitative and descriptive in design. Fourteen inpatients at a cardiovascular ward were interviewed. Qualitative content analysis was used for the analysis. The ethics of scientific work were adhered to. Each study participant gave his/her informed consent based on verbal and written information. The study was approved by the Research Ethics Committee at Uppsala University. The analysis revealed one theme and three subthemes related to patients' experiences of ward rounds. The main theme was handling of information from the daily ward round while waiting for private consultation. The subthemes were making the best of the short time spent on ward rounds; encountering traditional roles and taking comfort in staff competency; and being able to choose the degree to which one participates in the decision-making process. Several aspects of traditional ward round routines could be improved in regard to the two-way information exchange process between caregivers and patient. Patients' and caregivers' ability to communicate their goals and the environment in which the communication occurs are of great importance. The information provided by nurses is easier to understand than that provided by physicians. The atmosphere must be open; the patient should be treated with empathy by staff; and patients' right to participate must be acknowledged by all healthcare professionals involved. © 2013 Nordic College of Caring Science.

Clinician and cancer patient views on patient participation in treatment decision-making: a quantitative and qualitative exploration

Science.gov (United States)

Pieterse, A H; Baas-Thijssen, M C M; Marijnen, C A M; Stiggelbout, A M

2008-01-01

Patient participation in treatment decision-making is being increasingly advocated, although cancer treatments are often guideline-driven. Trade-offs between benefits and side effects underlying guidelines are made by clinicians. Evidence suggests that clinicians are inaccurate at predicting patient values. The aim was to assess what role oncologists and cancer patients prefer in deciding about treatment, and how they view patient participation in treatment decision-making. Seventy disease-free cancer patients and 60 oncologists (surgical, radiation, and medical) were interviewed about their role preferences using the Control Preferences Scale (CPS) and about their views on patient participation using closed- and open-ended questions. Almost all participants preferred treatment decisions to be the outcome of a shared process. Clinicians viewed participation more often as reaching an agreement, whereas 23% of patients defined participation exclusively as being informed. Of the participants, ⩾81% thought not all patients are able to participate and ⩾74% thought clinicians are not always able to weigh the pros and cons of treatment for patients, especially not quality as compared with length of life. Clinicians seemed reluctant to share probability information on the likely impact of adjuvant treatment. Clinicians should acknowledge the legitimacy of patients' values in treatment decisions. Guidelines should recommend elicitation of patient values at specific decision points. PMID:18781148

Can or must the patient participate to risk management in radiotherapy?

International Nuclear Information System (INIS)

Mollo, V.; Pernet, A.; Moutel, G.; Duchange, N.; Giraud, P.

2011-01-01

Purpose. - The present study aimed at analyzing if patient participation constitutes a promising way of improvement of patient safety, or not. The hypothesis is that patient participation is a means to develop a safety culture based on the cooperation between patients and health care providers, to improve patients' satisfaction and to reduce the costs associated to adverse events. Patients and methods. - A half-day session was organized on this theme during a training of radiotherapy professionals on risk management. Professionals were first distributed in three subgroups according to their specialty (radiation oncologists, radiation physicists and medical technicians), and had to work on four main questions relating to participation, among which the collection of real situations in which patients effectively contributed (positively or negatively) to patient safety. Results were then collectively discussed. Results. - Patient participation allows not only to detect and recover some mistakes or errors made by the professionals (error of identity), but also to decrease patients' risk behaviors (purposely taking the place of another patient in order to be treated faster). However, it must be seen as a possibility offered to patients, and not as an obligation. Conclusion. - Patient participation to patient safety is a field of study, which requires to be developed in order to define the conditions enhancing such participation and to implement a set of actions to improve health care safety by a cooperative management of this one. (authors)

The development and initial validation of a clinical tool for patients' preferences on patient participation--The 4Ps.

Science.gov (United States)

Eldh, Ann Catrine; Luhr, Kristina; Ehnfors, Margareta

2015-12-01

To report on the development and initial testing of a clinical tool, The Patient Preferences for Patient Participation tool (The 4Ps), which will allow patients to depict, prioritize, and evaluate their participation in health care. While patient participation is vital for high quality health care, a common definition incorporating all stakeholders' experience is pending. In order to support participation in health care, a tool for determining patients' preferences on participation is proposed, including opportunities to evaluate participation while considering patient preferences. Exploratory mixed methods studies informed the development of the tool, and descriptive design guided its initial testing. The 4Ps tool was tested with 21 Swedish researcher experts (REs) and patient experts (PEs) with experience of patient participation. Individual Think Aloud interviews were employed to capture experiences of content, response process, and acceptability. 'The 4Ps' included three sections for the patient to depict, prioritize, and evaluate participation using 12 items corresponding to 'Having Dialogue', 'Sharing Knowledge', 'Planning', and 'Managing Self-care'. The REs and PEs considered 'The 4Ps' comprehensible, and that all items corresponded to the concept of patient participation. The tool was perceived to facilitate patient participation whilst requiring amendments to content and layout. A tool like The 4Ps provides opportunities for patients to depict participation, and thus supports communication and collaboration. Further patient evaluation is needed to understand the conditions for patient participation. While The 4Ps is promising, revision and testing in clinical practice is required. © 2014 John Wiley & Sons Ltd.

Participation of chronic patients in medical consultations: patients' perceived efficacy, barriers and interest in support

NARCIS (Netherlands)

Henselmans, Inge; Heijmans, Monique; Rademakers, Jany; van Dulmen, Sandra

2015-01-01

Chronic patients are increasingly expected to participate actively in medical consultations. This study examined (i) patients' perceived efficacy and barriers to participation in consultations, (ii) patients' interest in communication support and (iii) correlates of perceived efficacy and barriers,

Assessing Patient Participation in Health Policy Decision-Making in Cyprus

Directory of Open Access Journals (Sweden)

Kyriakos Souliotis

2016-08-01

Full Text Available Although the importance of patient participation in the design and evaluation of health programs and services is well-documented, there is scarcity of research with regard to patient association (PA participation in health policy decision-making processes. To this end, the present study aimed to validate further a previously developed instrument as well as to investigate the degree of PA participation in health policy decision-making in Cyprus. A convenient sample of 114 patients-members of patients associations took part in the study. Participants were recruited from an umbrella organization, the Pancyprian Federation of Patient Associations and Friends (PFPA. PA participation in health policy decision-making was assessed with the Health Democracy Index (HDI, an original 8-item tool. To explore its psychometric properties, Cronbach α was computed as regards to its internal consistency, while its convergent validity was tested against a self-rated question enquiring about the degree of PA participation in health policy decision-making. The findings revealed that the HDI has good internal consistency and convergent validity. Furthermore, PAs were found to participate more in consultations in health-related organizations and the Ministry of Health (MoH as well as in reforms or crucial decisions in health policy. Lower levels were documented with regard to participation in hospital boards, ethics committees in clinical trials and health technology assessment (HTA procedures. Overall, PA participation levels were found to be lower than the mid-point of the scale. Targeted interventions aiming to facilitate patients’ involvement in health policy decision-making processes and to increase its impact are greatly needed in Cyprus.

How patients experience the surroundings in relation to patient participation: a qualitative study of inpatients with intestinal failure

Directory of Open Access Journals (Sweden)

Thyssen GD

2014-04-01

Full Text Available Gunvor Dichmann Thyssen, Anne BeckDepartment of Hepatology and Gastroenterology, Aarhus University Hospital, Aarhus, DenmarkIntroduction: Patient participation is known to improve patients' motivation, compliance, treatment results, and satisfaction with the received care. It is well known that the physical environment is of great importance in supporting patient involvement. A systematic literature search has shown a lack of articles on the subject of “surroundings” in relation to patient participation, for all patient groups.Aim: We aimed to investigate how patients with intestinal failure experience their hospital surroundings in relation to patient participation.Methods: The study included eight patients admitted for at least 2 weeks at the Intestinal Failure Unit, H8, Salford Royal NHS Foundation Trust, Manchester, United Kingdom. Included patients had a good level of consciousness with no confusion. The included patients participated in a semistructured interview. The interviews were analyzed using Malterud's principles of systematic text condensation.Results: The patients described that the surroundings enabled them to participate in their treatment and care. The surroundings made it possible for them and encouraged them to participate through: the possibility to seek and get information and the possibility to participate in daily activities. This led to a feeling of independence, reassurance, normality, control, responsibility, and confidence.Conclusion: The findings in this study indicate that the hospital surroundings are essential for the patients with respect to their ability to participate in their own care and treatment. The surroundings, in relation to patient participation, should be considered when planning and organizing nursing care. Further research is needed to increase the understanding of the surroundings in relation to patient participation - this research could, for eg, include the nurse's perspective

Patient participation in medication safety during an acute care admission.

Science.gov (United States)

McTier, Lauren; Botti, Mari; Duke, Maxine

2015-10-01

Patient participation in medication management during hospitalization is thought to reduce medication errors and, following discharge, improve adherence and therapeutic use of medications. There is, however, limited understanding of how patients participate in their medication management while hospitalized. To explore patient participation in the context of medication management during a hospital admission for a cardiac surgical intervention of patients with cardiovascular disease. Single institution, case study design. The unit of analysis was a cardiothoracic ward of a major metropolitan, tertiary referral hospital in Melbourne, Australia. Multiple methods of data collection were used including pre-admission and pre-discharge patient interviews (n = 98), naturalistic observations (n = 48) and focus group interviews (n = 2). All patients had changes made to their pre-operative cardiovascular medications as a consequence of surgery. More patients were able to list and state the purpose and side-effects of their cardiovascular medications at pre-admission than prior to discharge from hospital. There was very little evidence that nurses used opportunities such as medication administration times to engage patients in medication management during hospital admission. Failure to engage patients in medication management and provide opportunities for patients to learn about changes to their medications has implications for the quality and safety of care patients receive in hospital and when managing their medications once discharged. To increase the opportunity for patients to participate in medication management, a fundamental shift in the way nurses currently provide care is required. © 2013 John Wiley & Sons Ltd.

[Motivation of patients to participate in clinical trials. An explorative survey].

Science.gov (United States)

Gaul, Charly; Malcherczyk, Annett; Schmidt, Thomas; Helm, Jürgen; Haerting, Johannes

2010-02-01

Difficulties in recruiting patients for clinical trials lead to increasing costs, and prolonged implementation of evidences into medical practice. Knowledge about motivation and barriers in potential participants would be helpful to develop successful recruitment strategies. Currently, no systematic research of determining factors affecting the decision to participate in clinical studies is available from German samples. After been given details about a potential participation in a clinical or diagnostic study in nine study centers, patients were recruited for an additional structured questionnaire survey concerning motivation and barriers to participation. 62 patients were included into the survey. 95.1% did not have any experience with clinical studies before. 66.1% met the physician explaining the study and asking for informed consent for the first time. Despite this, 96.6% judged the physician to be competent. Family and friends were important for decision-making about the participation in a study. Gender was only of marginal influence. The majority of patients (91.4%) expected advantages of the study for their own. 88% of the patients denominated potential advantages for other patients as an additional motivator. The possibility of adverse events was inferior for patients in decision-making about participation in a clinical trial. Physicians recruiting patients for clinical studies should be well prepared about details of the study and should have adequate time for an introductory conversation in a quiet environment. Including relatives into the introductory conversation may enhance the motivation and therefore the success of recruitment. Potential advantages of a participation for the own treatment and additionally for other patients should be highlighted. Possible side effects should be explained in a realistic manner.

The development and initial validation of a clinical tool for patients' preferences on patient participation--The 4Ps.

OpenAIRE

Eldh, Ann Catrine; Luhr, Kristina; Ehnfors, Margareta

2015-01-01

AIMS: To report on the development and initial testing of a clinical tool, The Patient Preferences for Patient Participation tool (The 4Ps), which will allow patients to depict, prioritize, and evaluate their participation in health care. BACKGROUND: While patient participation is vital for high quality health care, a common definition incorporating all stakeholders' experience is pending. In order to support participation in health care, a tool for determining patients' preferences on partic...

Patient participation as discursive practice-A critical discourse analysis of Danish mental healthcare.

Science.gov (United States)

Joergensen, Kim; Praestegaard, Jeanette

2018-04-01

Patient participation is one of the most prevalent focus areas in the Danish healthcare debate. Patient participation is generally presented as a fundamental democratic right, and is stated in an objective language with legal requirements for healthcare professionals to ensure that patients systematically participate in their own courses of care and treatment. In the research literature, it is not clear what is meant by 'patient participation', and several discourses on patient participation exist side by side. This study explores how discourses of patient participation unfold and are at play in the articulations in official legal and political documents and patient records relating to a Danish psychiatric context. The documents and patient records have been analyzed using a Fairclough-inspired critical discourse approach which is concerned with how power is exercised through language. The research findings show that patient participation within Danish psychiatric healthcare is governed within a neoliberal discourse where underlying discourses; discourse of biomedicine, paternalism, management, evidence and ethics of care are embedded, and a discourse that seems to ascribe stigmatizing traits to mentally ill patients. © 2017 John Wiley & Sons Ltd.

Labour force participation among patients with rheumatoid arthritis

NARCIS (Netherlands)

Chorus, A.M.J.; Miedema, H.S.; Wevers, C.J.; Linden, S. van der

2000-01-01

Objectives - To assess work history and labour force participation among patients with rheumatoid arthritis (IRA) in the Netherlands, Method - A random sample of 1056 patients with RA aged 16-59 years from 17 rheumatology practices in the Netherlands was examined. Data on disease status and outcome

Patient participation in quality pain management during an acute care admission.

Science.gov (United States)

McTier, Lauren J; Botti, Mari; Duke, Maxine

2014-04-01

The objective of the study was to explore patient participation in the context of pain management during a hospital admission for a cardiac surgical intervention of patients with cardiovascular disease. This is a single-institution study, with a case-study design. The unit of analysis was a cardiothoracic ward of a major metropolitan, tertiary referral hospital in Melbourne, Australia. Multiple methods of data collection were used including preadmission and predischarge patient interviews (n=98), naturalistic observations (n=48), and focus group interviews (n=2). Patients' preference for participation in pain management was not always commensurate with their involvement in pain management. Patients displayed a greater understanding of their role in pain management in terms of reporting pain and the use of multimodal analgesics after surgery. The majority of patients, however, did not understand the importance of reporting pain to avoid complications. Patients had limited opportunity to participate in their pain management. On occasions in which clinicians did involve patients, the involvement appeared to be focused on reporting pain rather than treatment of pain. Patient participation in pain management during hospitalization is not optimal. This has implications for the quality of pain management patients receive. Higher engagement of patients in their pain management during hospitalization is required to ensure comfort, reduce potential for complications, and adequately prepare the patients to manage their pain following discharge from hospital.

The Influence of Nurses' Demographics on Patient Participation in Hospitals: A Cross-Sectional Study.

Science.gov (United States)

Malfait, Simon; Eeckloo, Kristof; Van Hecke, Ann

2017-12-01

Patient participation is an important issue in contemporary healthcare as it improves quality of care and enhances positive health outcomes. The participation of patients is mainly initiated by the nurses' willingness to share their power and responsibility, but knowledge on nurses' demographic characteristics influencing this behavior is nonexistent. This knowledge is essential to understand and improve patient participation. To determine if nurses' demographic characteristics influence their willingness to engage in patient participation. A cross-sectional multicenter study in 22 general and three university hospitals with 997 nurses was performed. The Patient Participation Culture Tool for healthcare workers, which measures patient participation behavior, was used. Multilevel analysis, taking into account the difference in wards and hospitals, was used to identify the influence of demographic characteristics. A position as supervisor (range: p nurses seem to be more reluctant in accepting a collaborative patient role (p = .002) and coping with more active patient behavior (p nurses on geriatric wards (p = .013), who also showed less sharing of information with their patients (p nurses' willingness to share power and responsibility with their patients, perhaps indicating that patient participation behavior is an advanced nursing skill and multifaceted interventions, are needed for optimal implementation. Moreover, supervising nurses have different perceptions on patient participation and possibly regard patient participation as an easier task than their team members. This could lead to misunderstandings about the expectations toward patient participation in daily practice, leading to struggles with their nursing staff. Both findings implicate that implementing patient participation on a wide scale is more difficult than expected, which is conflicting with the widespread societal demand for more participation. © 2017 Sigma Theta Tau International.

Community participation of patients 12 months post-stroke in Johannesburg, South Africa

Directory of Open Access Journals (Sweden)

Witness Mudzi

2013-01-01

Full Text Available Background: Improvement in health-related quality of life (HRQL is the main goal of rehabilitation. The ability of the stroke-patient to participate in various situations signifies successful rehabilitation. The aim of the study was to establish the extent of communityparticipation and the barriers and facilitators to the participation for stroke patients after their discharge.Method: This study formed part of a larger study focusing on the impact of caregiver education on stroke survivors and their careers. This was a longitudinal study comprising 200 patients with first-time ischaemic stroke. Although the patients were followed up at home at 3 months, 6 months and 12 months post-stroke, this paper focuses on the 12-months follow-up participation results. Patient functional ability was measured by using the Barthel Index (BI and the Rivermead Mobility Index (RMI, whereas participation was measured by using the International Classification of Functioning, Disability and Health (ICF checklist. Descriptive statistics were used to analyse the data.Results: Patients experienced severe to complete difficulty when undertaking single and multiple tasks without help 12-months post-discharge. They struggled with the preparation of meals, household work and interpersonal interactions, and they had difficulties withcommunity life and partaking in recreation and leisure activities. Immediate family and societal attitudes were viewed as facilitators to community participation whereas friends, transportation services and social security services were viewed as barriers to communityparticipation.Conclusion: The patient-ability to socialise and participate in community issues is currently poor. The identified barriers to community participation need to be addressed in order toimprove patient-participation in the community post-stroke.

Managing patients with neurologic disorders who participate in sports activities.

Science.gov (United States)

Crutchfield, Kevin E

2014-12-01

Patients with neurologic conditions have been discouraged from participating in organized sports because of theoretical detrimental effects of these activities to their underlying conditions. The purpose of this article is to review known risks associated with three specific clinical conditions most commonly encountered in a sports neurology clinic (epilepsy, migraines, and multiple sclerosis and to add to the neurologist's toolkit suggested interventions regarding management of athletes with these disorders. Increased participation in sports and athletics has positive benefits for patients with neurologic conditions and can be safely integrated into the lives of these patients with proper supervision from their treating neurologists. Patients with neurologic conditions can and should be encouraged to participate in organized sports as a method of maintaining their overall fitness, improving their overall level of function, and reaping the physical and psychological benefits that athletic competition has to offer.

42 CFR 482.90 - Condition of participation: Patient and living donor selection.

Science.gov (United States)

2010-10-01

... selected to receive a transplant, the center must document in the patient's medical record the patient... 42 Public Health 5 2010-10-01 2010-10-01 false Condition of participation: Patient and living... Condition of participation: Patient and living donor selection. The transplant center must use written...

Asymmetrical knowledge claims in general practice consultations with frequently attending patients: limitations and opportunities for patient participation.

Science.gov (United States)

Ariss, Steven M

2009-09-01

Asymmetry of knowledge does not simply relate to knowing or not knowing. Participants in consultations also display normative entitlements to knowledge which are related to their identities in the interaction. Claims of entitlement to knowledge are oriented to by the other participant as either straightforwardly acceptable or problematic. Thus research has shown that asymmetry in doctor-patient interactions is collaboratively achieved. Whilst the asymmetry of medical consultations has long been recognised, understanding asymmetry in the context of patient participation is becoming an increasingly important priority. This paper is not concerned with potential benefits or the feasibility of increasing patient participation in general practice (GP) consultations. Rather it seeks to describe specific limitations and opportunities for the participation of patients regarding the discussion of their problems, treatments and management of illness. Using Conversation Analysis this paper investigates GP consultations with frequently attending patients in the UK. It describes how the moral dimensions of epistemic authority constrain the different conversational resources available to GPs and patients. Findings suggest that in maintaining asymmetrical claims to knowledge debate is foregone in favour of efficient progression through the phases of the interaction. Thus interactions militate against the discussion of areas where alignment of perspectives might be lacking and participants do not pursue actions which might lead towards claiming a greater understanding of each others' point of view. However, there are aspects of consultations with frequently attending patients which display reduced asymmetry with regard to participants' claims to epistemic authority.

Research participation registers can increase opportunities for patients and the public to participate in health services research.

Science.gov (United States)

Leach, Verity; Redwood, Sabi; Lasseter, Gemma; Walther, Axel; Reid, Colette; Blazeby, Jane; Martin, Richard; Donovan, Jenny

2016-07-01

Members of the public and patients repeatedly indicate their willingness to take part in research, but current United Kingdom research governance involves complex rules about gaining consent. Research participation registers that seek consent from participants to be approached about future studies have several potential benefits, including: increased research participation across clinical and healthy populations; simplified recruitment to health care research; support for people's autonomy in decision making; and improved efficiency and generalizability of research. These potential benefits have to be balanced against ethical and governance considerations. With appropriate processes in place, seeking prospective consent from patients and members of the public to be approached about future studies could potentially increase public participation in health research without compromising informed consent and other ethical principles. © The Author(s) 2016.

Patient participation during oncological encounters: barriers and facilitators experienced by elderly cancer patients.

NARCIS (Netherlands)

Noordman, J.; Driesenaar, J.A.; Henselmans, I.; Heijmans, M.; Verboom, J.; Dulmen, S. van

2017-01-01

Objective: To enhance patient participation during (oncological) encounters, this study aims to gain insight into communication barriers and supportive interventions experienced by elderly patients with cancer. Method: A mixed method design, including both quantitative (secondary survey data

Measuring patient participation in surgical treatment decision-making from healthcare professionals' perspective.

Science.gov (United States)

Heggland, Liv-Helen; Mikkelsen, Aslaug; Øgaard, Torvald; Hausken, Kjell

2014-02-01

To develop, empirical test, and validate an instrument measuring patient participation in surgical treatment decision-making from healthcare professionals' perspective. Since the advent of New Public Management in many Western countries, patient participation in healthcare decision-making has been considered to be a best practice. A common notion is that well-educated and well-informed public want to choose their own treatments and providers and want to ask questions about the quality of their health services. Survey. A self-report-measuring instrument was designed and administered to 620 healthcare professionals. Items were developed, validated and tested by 451 nurses and physicians working in six surgical wards in a University Hospital in Norway. A 16-item scale with the following four dimensions was developed: information dissemination, formulation of options, integration of information and control. Factor analysis procedures and reliability testing were performed. A one-way, between-groups analysis of variance was conducted to compare doctors' and nurses' opinions on four dimensions of patient participation in surgical treatment decision-making. This article shows that patient participation in surgical treatment decision-making can be measured by a 16-item scale and four distinct dimensions. The analysis demonstrated a reasonable level of construct validity and reliability. Nurses and physicians have a positive attitude towards patient participation overall, but the two groups differ in the extent to which they accept the idea of patient participation in treatment decision-making. The instrument can be a tool for managers and healthcare professionals in the implementation of patient participation in clinical practice. Data from the instrument can be useful to identify health services being provided and what areas that could strengthen patient participation. © 2013 Blackwell Publishing Ltd.

Study participation rate of patients with acute spinal cord injury early during rehabilitation.

Science.gov (United States)

Krebs, J; Katrin Brust, A; Tesini, S; Guler, M; Mueller, G; Velstra, I M; Frotzler, A

2015-10-01

Retrospective observational study. To investigate the study participation rate of patients with acute spinal cord injury (SCI) early during rehabilitation after conveying preliminary study information. Single SCI rehabilitation center in Switzerland. Newly admitted acute SCI patients receive a flyer to inform them concerning the purpose of clinical research, patient rights and active studies. Upon patient request, detailed study information is given. The rate of patients asking for detailed information (study interest) and the rate of study participation was evaluated from May 2013 to October 2014. Furthermore, the number of patients not withdrawing consent to the utilization of coded health-related data was determined. The flyer was given to 144 of the 183 patients admitted during the observation period. A total of 96 patients (67%) were interested in receiving detailed information, and 71 patients (49%) finally participated in at least one study. The vast majority of patients (that is, 91%) did not withdraw consent for retrospective data analysis. An age over 60 years had a significantly (P⩽0.023) negative effect on study interest and participation, and the consent rate to retrospective data analysis was significantly (Pinterest and participation were reduced more than 5 and 14-fold, respectively, in patients older than 60 years. The relatively low (approximately 50%) study participation rates of acute SCI patients should be considered when planning clinical trials. The recruitment of patients older than 60 years may be reduced substantially.

The association between patient participation and functional gain following inpatient rehabilitation.

Science.gov (United States)

Morghen, Sara; Morandi, Alessandro; Guccione, Andrew A; Bozzini, Michela; Guerini, Fabio; Gatti, Roberto; Del Santo, Francesco; Gentile, Simona; Trabucchi, Marco; Bellelli, Giuseppe

2017-08-01

To evaluate patients' participation during physical therapy sessions as assessed with the Pittsburgh rehabilitation participation scale (PRPS) as a possible predictor of functional gain after rehabilitation training. All patients aged 65 years or older consecutively admitted to a Department of Rehabilitation and Aged Care (DRAC) were evaluated on admission regarding their health, nutritional, functional and cognitive status. Functional status was assessed with the functional independence measure (FIM) on admission and at discharge. Participation during rehabilitation sessions was measured with the PRPS. Functional gain was evaluated using the Montebello rehabilitation factor score (MRFS efficacy), and patients stratified in two groups according to their level of functional gain and their sociodemographic, clinical and functional characteristics were compared. Predictors of poor functional gain were evaluated using a multivariable logistic regression model adjusted for confounding factors. A total of 556 subjects were included in this study. Patients with poor functional gain at discharge demonstrated lower participation during physical therapy sessions were significantly older, more cognitively and functionally impaired on admission, more depressed, more comorbid, and more frequently admitted for cardiac disease or immobility syndrome than their counterparts. There was a significant linear association between PRPS scores and MRFS efficacy. In a multivariable logistic regression model, participation was independently associated with functional gain at discharge (odds ratio 1.51, 95 % confidence interval 1.19-1.91). This study showed that participation during physical therapy affects the extent of functional gain at discharge in a large population of older patients with multiple diseases receiving in-hospital rehabilitation.

Participation restrictions in ambulatory amyotrophic lateral sclerosis patients: Physical and psychological factors.

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Van Groenestijn, Annerieke C; Schröder, Carin D; Kruitwagen-Van Reenen, Esther T; Van Den Berg, Leonard H; Visser-Meily, Johanna M A

2017-11-01

The aim of this study was to assess the prevalence of participation restrictions in ambulatory patients with amyotrophic lateral sclerosis (ALS) and to identify physical and psychological contributory factors. In this cross-sectional study, self-reported participation restrictions of 72 ambulatory ALS patients were assessed using the social health status dimension (SIPSOC) of the Sickness Impact Profile (SIP-68). Associations between SIPSOC and physical functioning, psychological factors, and demographic factors were analyzed using hierarchical regression analyses. Ninety-two percent of the patients reported participation restrictions; 54.9% could be explained by physical functioning; psychological factors accounted for 8.1% of the variance. Lung capacity, functional mobility, fatigue, and helplessness were independently associated with participation restrictions. Ambulatory ALS patients have participation restrictions, which may be influenced if early ALS care is directed toward lung capacity, functional mobility, fatigue, and feelings of helplessness. Muscle Nerve 56: 912-918, 2017. © 2017 Wiley Periodicals, Inc.

Text Messaging Improves Participation in Laboratory Testing in Adolescent Liver Transplant Patients.

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McKenzie, Rebecca B; Berquist, William E; Foley, Megan A; Park, K T; Windsheimer, Jered E; Litt, Iris F

In solid organ transplant patients, non-participation in all aspects of the medical regimen is a prevalent problem associated with adverse consequences particularly in the adolescent and young adult (AYA) age group. This study is the first to evaluate the feasibility, utility and impact of a text messaging (TM) intervention to improve participation in laboratory testing in adolescent liver transplant patients. AYA patients, aged 12 to 21 years, were recruited for a prospective pilot trial evaluating a TM intervention delivered over a 1-year period. The intervention involved automated TM reminders with feedback administered according to a prescribed laboratory testing frequency. Participation rate in laboratory testing after the intervention was compared to the year prior. Patient responses and feedback by text and survey were used to assess feasibility, acceptability and use of the intervention. Forty-two patients were recruited and 33 patients remained enrolled for the study duration. Recipients of the TM intervention demonstrated a significant improvement in participation rate in laboratory testing from 58% to 78% (Prate was also significantly higher than in non-intervention controls (P=.003). There was a high acceptability, response rate and a significant correlation with reported versus actual completion of laboratory tests by TM. TM reminders significantly improved participation in laboratory testing in AYA liver transplant patients. The intervention demonstrated feasibility, acceptability, and use with a high proportion of patients who engaged in and perceived a benefit from using this technology.

Patient Participation in Decision Making During Nursing Care in Greece--A Comparative Study.

Science.gov (United States)

Kolovos, Petros; Kaitelidou, Daphne; Lemonidou, Chrysoula; Sachlas, Athanasios; Sourtzi, Panayota

2015-01-01

To describe patient participation in decision making during nursing care from patients' and nursing staff' perspectives. The sample consisted of medical and surgical patients (n = 300) and the nursing staff (n = 118) working in the respective wards in three general hospitals. A questionnaire was used for the study; data were collected from April 2009 to September 2010. Data were analyzed by an exploratory factor analysis. Patient participation was recorded at a medium level during nursing care, although it was rated as important from both patients and nursing staff. Exploratory factor analysis revealed the factor structure for the planning and implementation of the nursing care. Providers and receivers of nursing care perceived participation in a similar way. Interpersonal interaction was supported from older and less educated patients, as well as from university-educated nurses. Patient participation was greater in practical aspects of care and limited in technical medical issues and supportive services. Patient participation, although moderate, was evident during nursing care in hospital settings. Paternalism in the decision-making process was the dominant trend, whereas interpersonal interaction between the parties was recognized as a prerequisite for planning nursing care. © 2014 Wiley Periodicals, Inc.

mutual participation in the health worker-patient relationship

African Journals Online (AJOL)

Medunsa) ... Keywords: mutual participation, health worker-patient relationship, decision ... The importance of a mutual participatory model in medical care and decision ... workers become aware of differences in opinion or in the balance of power, ...

SOCIAL PARTICIPATION OF DIABETES AND EX-LEPROSY PATIENTS IN THE NETHERLANDS AND PATIENT PREFERENCE FOR COMBINED SELF-CARE GROUPS

Directory of Open Access Journals (Sweden)

Henry John Christiaan De Vries

2014-08-01

Full Text Available Introduction: Earlier we showed that neuropathic complications limit social participation of ex-leprosy patients, even in a non-endemic leprosy setting like the Netherlands. Self-care groups for ex-leprosy patients can strengthen self-worth of participants, prevent further handicap, and enable the exchange of coping strategies. For non-endemic leprosy settings with a very low rate of leprosy patients a self-care group exclusively for (exleprosy patients is not likely to be feasible. A combined group with patients facing comparable morbidity would be more efficient than disease specific self-care groups. Here, we studied the comparability in social constraints of diabetic patients and ex-leprosy patients. Moreover, we investigated if combined self-care groups for ex-leprosy patients and diabetic patients would be desirable and acceptable for possible participants.Methods: Social participation was studied based on in-depth interviews and Participation Scale information collected from 41 diabetic patients and compared with the data of 31 ex-leprosy patients from a prior study. Moreover, we made an inventory of potential strengths and limitations and attitudes towards combined self-care groups for diabetic patients with neuropathy.Results: The following themes emerged among diabetic patients: disease confrontation, dependency, conflict with partner or relatives, feelings of inferiority, stigma, abandoning social activities, fear of the future, lack of information and hiding the disease. These themes were very similar to those voiced by the previously interviewed ex-leprosy patients. The latter more often mentioned stigma and disease ignorance among Dutch health care workers. Whereas ex-leprosy patients perceived stigma on multiple fronts, diabetic patients only mentioned feeling inferior. Diabetic patients experienced some form of participation restriction in 39% of the cases as opposed to 71% of the ex-leprosy patients. Diabetic patients did

Discharge planning: "fooling ourselves?"--patient participation in conferences.

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Efraimsson, Eva; Sandman, P O; Hydén, Lars-Christer; Rasmussen, Birgit H

2004-07-01

The aim of discharge planning conferences (DPCs) is to co-ordinate resources and to enhance patient involvement in care in connection with relocation from hospital. DPCs can be characterized as institutional conversations, and are often executed as standard procedures, but the scientific basis for the activity is weak. The aim of this study was to illuminate and describe the communication at DPCs. A purposeful and consecutive sample of eight DPCs was collected in which the future care of eight women, aged 70 years or more, was discussed. Transcribed video recordings were analysed in two steps. "The initial analysis" aimed at describing the structure and content of the communication. This description constituted the basis for an interpretation, leading to "the focused analysis" aiming at finding evidence for the assumptions made in the interpretation. The result revealed that the participation of patients was very less the DPCs. The decisions had often already been made, and the women were expected to be pleased with the decision; institutional representatives (IRs) frequently justified their actions by referring to bureaucratic praxis. The women were both encouraged and excluded from participation by the IRs. This dichotomy occurred because the IRs, as professionals, struggled to simultaneously realize their caring mission and their obligation to enforce the values and rules of the institution, i.e. efficiency and rationality. Thus, IRs and patients were equally imprisoned within the institutional system. RELEVANCE TO CLINICAL RESEARCH: This result illustrates how conflicting paradigms are imbedded and reproduced by healthcare professionals in their communicative praxis. Awareness of this is a prerequisite for improvements in working procedures congruent with a caring paradigm that support patient participation.

Why do pregnant women participate in research? A patient participation investigation using Q-Methodology.

Science.gov (United States)

Meshaka, Riwa; Jeffares, Stephen; Sadrudin, Farah; Huisman, Nicole; Saravanan, Ponnusamy

2017-04-01

Patient participation in study design is paramount to design studies that are acceptable to patients. Despite an increase in research involving pregnant women, relatively little is known about the motivational factors that govern their decision to be involved in a clinical trial, compared to other patient groups. To better understand the viewpoints of pregnant women who take part in clinical trials. We chose to use Q-Methodology, a method of exploring the structure of opinions surrounding a topic. We developed a set of 40 statements that encompassed the reasons why pregnant women might want to take part in research and 30 research participants from the PRiDE study (an observational trial investigating the role of micronutrients in gestational diabetes) were asked to rank them in order of agreement. The finished matrices from each participant were compared and analysed to produce capturing viewpoints. About 30 women aged 19-40 involved in the PRiDE study completed the questionnaire. There were two overarching motivators that emerged: a willingness to help medical research and improve our knowledge of medical science, and having a personal connection to the disease, therefore a potential fear of being affected by it. A third, less significant viewpoint, was that of a lack of inconvenience being a motivating factor. Understanding what motivates pregnant women to decide to take part in a research study is valuable and helps researchers maximize their uptake and retention rates when designing a trial involving pregnant women. © 2016 The Authors. Health Expectations Published by John Wiley & Sons Ltd.

Patients' preferences for participation in treatment decision-making at the end of life: qualitative interviews with advanced cancer patients.

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Brom, Linda; Pasman, H Roeline W; Widdershoven, Guy A M; van der Vorst, Maurice J D L; Reijneveld, Jaap C; Postma, Tjeerd J; Onwuteaka-Philipsen, Bregje D

2014-01-01

Patients are often encouraged to participate in treatment decision-making. Most studies on this subject focus on choosing between different curative treatment types. In the last phase of life treatment decisions differ as they often put more emphasis on weighing quantity against quality of life, such as whether or not to start treatment aimed at life prolongation but with the possibility of side effects. This study aimed to obtain insight into cancer patients' preferences and the reasons for patients' preferred role in treatment decision-making at the end of life. 28 advanced cancer patients were included at the start of their first line treatment. In-depth interviews were held prior to upcoming treatment decisions whether or not to start a life prolonging treatment. The Control Preference Scale was used to start discussing the extent and type of influence patients wanted to have concerning upcoming treatment decision-making. Interviews were audio taped and transcribed. All patients wanted their physician to participate in the treatment decision-making process. The extent to which patients themselves preferred to participate seemed to depend on how patients saw their own role or assessed their own capabilities for participating in treatment decision-making. Patients foresaw a shift in the preferred level of participation to a more active role depending in the later phase of illness when life prolongation would become more limited and quality of life would become more important. Patients vary in how much involvement they would like to have in upcoming treatment decision-making. Individual patients' preferences may change in the course of the illness, with a shift to more active participation in the later phases. Communication about patients' expectations, wishes and preferences for participation in upcoming treatment decisions is of great importance. An approach in which these topics are openly discussed would be beneficial.

A qualitative identification of categories of patient participation in decision-making by health care professionals and patients during surgical treatment.

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Heggland, Liv-Helen; Hausken, Kjell

2013-05-01

The aim of this article is to identify how health care professionals and patients experience patient participation in decision-making processes in hospitals. Eighteen semi-structured interviews with experts from different disciplines such as medicine and nursing in surgical departments as well as patients who have undergone surgical treatment constitute the data. By content analysis four categories of patient participation were identified: information dissemination, formulation of options, integration of information, and control. To meet the increasing demands of patient participation, this categorization with four identified critical areas for participation in decision-making has important implications in guiding information support for patients prior to surgery and during hospitalization.

Patient empowerment, patient participation and patient-centeredness in hospital care : A concept analysis based on a literature review

NARCIS (Netherlands)

Castro, E.M.; van Regenmortel, T.; Vanhaecht, K.; Sermeus, W.; van Hecke, A.

2016-01-01

Objectives The concepts of patient empowerment, patient participation and patient-centeredness have been introduced as part of the trend towards a more participatory health care and have largely been used interchangeably. Although these concepts have been discussed for a number of years, their exact

The key actor: a qualitative study of patient participation in the handover process in Europe

Science.gov (United States)

Flink, Maria; Hesselink, Gijs; Pijnenborg, Loes; Wollersheim, Hub; Vernooij-Dassen, Myrra; Dudzik-Urbaniak, Ewa; Orrego, Carola; Toccafondi, Giulio; Schoonhoven, Lisette; Gademan, Petra J; Johnson, Julie K; Öhlén, Gunnar; Hansagi, Helen; Olsson, Mariann; Barach, Paul

2012-01-01

Background Patient safety experts have postulated that increasing patient participation in communications during patient handovers will improve the quality of patient transitions, and that this may reduce hospital readmissions. Choosing strategies that enhance patient safety through improved handovers requires better understanding of patient experiences and preferences for participation. Objective The aim of this paper is to explore the patients’ experiences and perspectives related to the handovers between their primary care providers and the inpatient hospital. Methods A qualitative secondary analysis was performed, based on individual and focus group patient interviews with 90 patients in five European countries. Results The analysis revealed three themes: patient positioning in the handover process; prerequisites for patient participation and patient preferences for the handover process. Patients’ participation ranged from being the key actor, to sharing the responsibility with healthcare professional(s), to being passive participants. For active participation patients required both personal and social resources as well as prerequisites such as information and respect. Some patients preferred to be the key actor in charge; others preferred their healthcare professionals to be the key actors in the handover. Conclusions Patients’ participation is related to the healthcare system, the activity of healthcare professionals’ and patients’ capacity for participation. Patients prefer a handover process where the responsibility is clear and unambiguous. Healthcare organisations need a clear and well-considered system of responsibility for handover processes, that takes into account the individual patient's need of clarity, and support in relation to his/hers own recourses. PMID:23112290

It's About Me: Patients' Experiences of Patient Participation in the Web Behavior Change Program for Activity in Combination With Multimodal Pain Rehabilitation.

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Nordin, Catharina; Michaelson, Peter; Eriksson, Margareta K; Gard, Gunvor

2017-01-18

Patients' participation in their health care is recognized as a key component in high-quality health care. Persons with persistent pain are recommended treatments with a cognitive approach from a biopsychosocial explanation of pain, in which a patient's active participation in their rehabilitation is in focus. Web-based interventions for pain management have the potential to increase patient participation by enabling persons to play a more active role in rehabilitation. However, little is known about patients' experiences of patient participation in Web-based interventions in clinical practice. The objective of our study was to explore patients' experiences of patient participation in a Web Behavior Change Program for Activity (Web-BCPA) in combination with multimodal rehabilitation (MMR) among patients with persistent pain in primary health care. Qualitative interviews were conducted with 15 women and 4 men, with a mean age of 45 years. Data were analyzed with qualitative content analysis. One theme, "It's about me," and 4 categories, "Take part in a flexible framework of own priority," "Acquire knowledge and insights," "Ways toward change," and "Personal and environmental conditions influencing participation," were developed. Patient participation was depicted as being confirmed in an individualized and structured rehabilitation framework of one's own choice. Being confirmed was fundamental to patient participation in the interaction with the Web-BCPA and with the health care professionals in MMR. To acquire knowledge and insights about pain and their life situation, through self-reflection in the solitary work in the Web-BCPA and through feedback from the health care professionals in MMR, was experienced as patient participation by the participants. Patient participation was described as structured ways to reach their goals of behavior change, which included analyzing resources and restrictions, problem solving, and evaluation. The individual's emotional and

Patient advocacy and patient centredness in participant recruitment to randomized-controlled trials: implications for informed consent.

Science.gov (United States)

Tomlin, Zelda; deSalis, Isabel; Toerien, Merran; Donovan, Jenny L

2014-10-01

With the routinization of evidence-based medicine and of the randomized-controlled trial (RCT), more patients are becoming 'sites of evidence production' yet, little is known about how they are recruited as participants; there is some evidence that 'substantively valid consent' is difficult to achieve. To explore the views and experiences of nurses recruiting patients to randomized-controlled trials and to examine the extent to which their recruitment practices were patient-centred and patient empowering. Semi-structured in-depth interviews; audio recording of recruitment appointments; thematic interactional analysis (drawing on discourse and conversation analysis). Nurses recruiting patients to five publicly funded RCTs and patients consenting to the recording of their recruitment sessions. The views of recruiting nurses about their recruitment role; the extent to which nurse-patient interactions were patient-centred; the nature of the nurses' interactional strategies and the nature and extent of patient participation in the discussion. The nurses had a keen sense of themselves as clinicians and patient advocates and their perceptions of the trial and its interventions were inextricably linked to those of the patients. However, many of their recruitment practices made it difficult for patients to play an active and informed part in the discussion about trial participation, raising questions over the quality of consent decisions. Nurses working in patient recruitment to RCTs need to reconcile two different worlds with different demands and ethics. Evidence production, a central task in evidence-based medicine, poses a challenge to patient-centred practice and more research and relevant training are needed. © 2012 John Wiley & Sons Ltd.

Wikis to facilitate patient participation in developing information leaflets: first experiences

NARCIS (Netherlands)

Belt, T.H. van de; Faber, M.J.; Knijnenburg, J.M.; Duijnhoven, N.T.L. van; Nelen, W.L.D.M.; Kremer, J.A.M.

2014-01-01

OBJECTIVE: Although patients have gained a wealth of experienced based knowledge they are usually not involved in the development of patient information. We sought to determine the technical feasibility of wikis in generating dynamic patient information leaflets with participation from patients and

Participation rate of cancer patients in treatment decisions: a cross sectional study

Directory of Open Access Journals (Sweden)

Mohammad Khammarnia

2017-12-01

Full Text Available Background and objective: Cancer is one of the most common diseases and the second reason of death in Iran. Giving decision making authority to patients is one of the fundamental principles of the protection of patients. Patients have rights as consumers of health care services that nurses, physician and other health professionals are responsible for maintaining and protecting it. This study aimed to determine cancer patients’ involvement in treatment decisions making. Methods: This cross-sectional study was carried out as descriptive-analytic with practical purpose in 2017 in Zahedan University of Medical Sciences. The study population included 1,000 patients who had cancer that whom 450 patients were selected by simple random sampling. To measure patient participation in treatment decisions, was used of Levente Kristona standard questionnaire. Reliability and validity of the questionnaire was confirmed (coefficient = 0.82. For data analysis used of software spss21 with descriptive statistics and chi-square tests Results: among the patients, 197 men (53% and 177 women (47% with a mean age of 31 years were examined. The results of this study showed that the score of mean participation in treatment decisions among the cancer patients was 30 ± 12 and it was in low level. The patients’ participation in treatment decisions had a significant relationship with education level (P = 0.027, however, it was not statistical significant with gender, age, income, occupation and type of cancer and other demographic variables (P> 0.05. Conclusion: In general, that patients' participation in clinical decision making is weak and low. Since patients’ participation in clinical decisions could affect the quality of treatment decisions, therefore, health care providers should attention more to this fact. Also, culturalizating and education according to patients’ knowledge and use of treatment techniques are recommended for clinical decision making promotion

Interactional difficulties as a resource for patient participation in prenatal screening consultations in Hong Kong.

Science.gov (United States)

Kang, M Agnes; Zayts, Olga A

2013-07-01

In this paper, we examine the interactional means by which non-native English speaking patients in Hong Kong participate in prenatal screening sessions. Using interactional sociolinguistics as the theoretical framework, we apply the concept of contextualization cues to illustrate that patients indicate their participation in the consultation through verbal and non-verbal modes. We find that non-native English speaking patients participate: (1) by displaying the interactional difficulties they are encountering and (2) by coordinating their displays of interactional difficulties with the activities of the healthcare provider. We conclude that the notion of patient participation must be expanded to take into account non-native speaking contexts; in particular, that collaborative displays of knowledge (or lack thereof) must be included as part of the definition of patient participation. While verbal contributions represent an important mode of participation in consultations, patients also participate by contextualizing their lack of understanding, which then can serve as a resource to healthcare providers in pursuing meaningful consultations. Our analysis illustrates how health care professionals' awareness of the modes of patient participation and what these modes may signal in non-native consultations can help to establish what the patient knows in the consultation. Copyright © 2013 Elsevier Ireland Ltd. All rights reserved.

Putting patient participation into practice in pediatrics-results from a qualitative study in pediatric oncology.

Science.gov (United States)

Ruhe, Katharina Maria; Wangmo, Tenzin; De Clercq, Eva; Badarau, Domnita Oana; Ansari, Marc; Kühne, Thomas; Niggli, Felix; Elger, Bernice Simone

2016-09-01

Adequate participation of children and adolescents in their healthcare is a value underlined by several professional associations. However, little guidance exists as to how this principle can be successfully translated into practice. A total of 52 semi-structured interviews were carried out with 19 parents, 17 children, and 16 pediatric oncologists. Questions pertained to participants' experiences with patient participation in communication and decision-making. Applied thematic analysis was used to identify themes with regard to participation. Three main themes were identified: (a) modes of participation that captured the different ways in which children and adolescents were involved in their healthcare; (b) regulating participation, that is, regulatory mechanisms that allowed children, parents, and oncologists to adapt patient involvement in communication and decision-making; and (c) other factors that influenced patient participation. This last theme included aspects that had an overall impact on how children participated. Patient participation in pediatrics is a complex issue and physicians face considerable challenges in facilitating adequate involvement of children and adolescents in this setting. Nonetheless, they occupy a central role in creating room for choice and guiding parents in involving their child. Adequate training of professionals to successfully translate the principle of patient participation into practice is required. •Adequate participation of pediatric patients in communication and decision-making is recommended by professional guidelines but little guidance exists as to how to translate it into practice. What is New: •The strategies used by physicians, parents, and patients to achieve participation are complex and serve to both enable and restrict children's and adolescents' involvement.

Social participation of diabetes and ex-leprosy patients in the Netherlands and patient preference for combined self-care groups.

Science.gov (United States)

de Vries, Henry J C; de Groot, Roos; van Brakel, Wim H

2014-01-01

Earlier, we showed that neuropathic complications limit social participation of ex-leprosy patients, even in a non-endemic leprosy setting like the Netherlands. Self-care groups for ex-leprosy patients can strengthen self-worth of participants, prevent further handicap, and enable the exchange of coping strategies. For non-endemic leprosy settings with a very low rate of leprosy patients, a self-care group exclusively for (ex)leprosy patients is not likely to be feasible. A combined group with patients facing comparable morbidity would be more efficient than disease-specific self-care groups. Here, we studied the comparability in social constraints of diabetic patients and ex-leprosy patients. Moreover, we investigated if combined self-care groups for ex-leprosy patients and diabetic patients would be desirable and acceptable for possible participants. Social participation was studied based on in-depth interviews and Participation Scale information collected from 41 diabetic patients and compared with the data of 31 ex-leprosy patients from a prior study. Moreover, we made an inventory of potential strengths and limitations and attitudes toward combined self-care groups for diabetic patients with neuropathy. The following themes emerged among diabetic patients: disease confrontation, dependency, conflict with partner or relatives, feelings of inferiority, stigma, abandoning social activities, fear of the future, lack of information, and hiding the disease. These themes were very similar to those voiced by the previously interviewed ex-leprosy patients. The latter more often mentioned stigma and disease ignorance among Dutch health care workers. Whereas ex-leprosy patients perceived stigma on multiple fronts, diabetic patients only mentioned feeling inferior. Diabetic patients experienced some form of participation restriction in 39% of the cases as opposed to 71% of the ex-leprosy patients. Diabetic patients did acknowledge the comparability with leprosy as far as

A qualitative study on mindfulness-based stress reduction for breast cancer patients: how women experience participating with fellow patients.

Science.gov (United States)

Schellekens, Melanie P J; Jansen, Ellen T M; Willemse, Heidi H M A; van Laarhoven, Hanneke W M; Prins, Judith B; Speckens, Anne E M

2016-04-01

Peer support groups for cancer patients show mixed findings regarding effectiveness on psychological wellbeing. When embedded in a psychosocial intervention, such as mindfulness-based stress reduction (MBSR), peer support might be of more benefit to participants. This study is a qualitative exploration of how women with breast cancer experience the possible benefits and impediments of participating with fellow patients in an MBSR training. Five focus groups (n = 37) and three individual interviews (n = 3) were conducted with breast cancer patients who participated in MBSR. The qualitative data were analysed with the constant comparative method in order to develop a grounded theory. We could identify a process where at the start of MBSR, patients experienced anticipatory fear for facing the suffering of fellow patients, especially for those who could not be cured anymore. In most women, this fear gradually subsided during the first two sessions. The atmosphere in the MBSR training was experienced as safe and supportive, providing a context where participants could connect with and trust one another. In turn, this facilitated participants to learn from one another. Our findings do not only show that the peer group facilitates the learning process in MBSR, but the MBSR also seemed to provide an atmosphere that promotes the experienced social support in participants. In addition, the results emphasize the importance for mindfulness teachers to acknowledge and explore the fear for facing fellow patients in the group. Future research should examine whether the results are generalizable to patients with other cancer types.

Clinical decision making for a tooth with apical periodontitis: the patients' preferred level of participation.

Science.gov (United States)

Azarpazhooh, Amir; Dao, Thuan; Ungar, Wendy J; Chaudry, Faiza; Figueiredo, Rafael; Krahn, Murray; Friedman, Shimon

2014-06-01

To effectively engage patients in clinical decisions regarding the management of teeth with apical periodontitis (AP), there is a need to explore patients' perspectives on the decision-making process. This study surveyed patients for their preferred level of participation in making treatment decisions for a tooth with AP. Data were collected through a mail-out survey of 800 University of Toronto Faculty of Dentistry patients, complemented by a convenience sample of 200 patients from 10 community practices. The Control Preferences Scale was used to evaluate the patients' preferences for active, collaborative, or passive participation in treatment decisions for a tooth with AP. Using bivariate and logistic regression analyses, the Gelberg-Andersen Behavioral Model for Vulnerable Populations was applied to the Control Preferences Scale questions to understand the influential factors (P ≤ .05). Among 434 of 1,000 respondents, 44%, 40%, and 16% preferred an active, collaborative, and passive participation, respectively. Logistic regression showed a significant association (P ≤ .025) between participants' higher education and preference for active participation compared with a collaborative role. Also, immigrant status was significantly associated with preference for passive participation (P = .025). The majority of patients valued an active or collaborative participation in deciding treatment for a tooth with AP. This pattern implied a preference for a patient-centered practice mode that emphasizes patient autonomy in decision making. Copyright © 2014 American Association of Endodontists. Published by Elsevier Inc. All rights reserved.

Patient participation in decision making on biomedical research: changing the network

NARCIS (Netherlands)

Caron - Flinterman, J.F.; Broerse, J.E.W.; Bunders - Aelen, J.G.F.

2007-01-01

Participation of end users in decision-making on science is increasingly practiced, as witnessed by the growing body of scientific literature on case evaluations. In the biomedical field, however, end-user participation in decision-making is rare. Some scholars argue that because patients are

Individualized Comprehensive Lifestyle Intervention in Patients Undergoing Chemotherapy with Curative or Palliative Intent: Who Participates?

Directory of Open Access Journals (Sweden)

Karianne Vassbakk-Brovold

Full Text Available Knowledge about determinants of participation in lifestyle interventions in cancer patients undergoing chemotherapy, particularly with palliative intent, remains poor. The objective of the present study was to identify determinants of participating in a 12 month individualized, comprehensive lifestyle intervention, focusing on diet, physical activity, mental stress and smoking cessation, in cancer patients receiving chemotherapy with curative or palliative intent. The secondary objective was to identify participation determinants 4 months into the study.Newly diagnosed cancer patients starting chemotherapy at the cancer center in Kristiansand/Norway (during a 16 month inclusion period were screened. Demographic and medical data (age, sex, body mass index, education level, marital status, smoking status, Eastern Cooperative Oncology Group performance status (ECOG, diagnosis, tumor stage and treatment intention was analyzed for screened patients.100 of 161 invited patients participated. There were more females (69 vs. 48%; P = 0.004, breast cancer patients (46 vs. 25%; P = 0.007, non-smokers (87 vs. 74%; P = 0.041, younger (mean age 60 vs. 67 yrs; P 70 years were less likely to participate at baseline and 4 months.Individualized lifestyle interventions in cancer patients undergoing chemotherapy appear to facilitate a high participation rate that declines with increasing age; both during the enrollment process and completing the intervention. Neither oncologic nor socioeconomic variables deterred participation.

Social participation of patients with hemophilia in the Netherlands

NARCIS (Netherlands)

Plug, Iris; Peters, Marjolein; Mauser-Bunschoten, Eveline P.; de Goede-Bolder, Arja; Heijnen, Lily; Smit, Cees; Willemse, Jose; Rosendaal, Frits R.; van der Bom, Johanna G.

2008-01-01

The introduction of replacement therapy in the 1960s has improved medical and social circumstances gradually. The availability of prophylactic treatment has further increased the possibilities of a "normal" life for patients with hemophilia. We examined whether social participation and

Urine Creatinine Concentrations in Drug Monitoring Participants and Hospitalized Patients.

Science.gov (United States)

Love, Sara A; Seegmiller, Jesse C; Kloss, Julie; Apple, Fred S

2016-10-01

Urine drug testing is commonly performed in both clinical and forensic arenas for screening, monitoring and compliance purposes. We sought to determine if urine creatinine concentrations in monitoring program participants were significantly different from hospital in-patients and out-patients undergoing urine drug testing. We retrospectively reviewed urine creatinine submitted in June through December 2015 for all specimens undergoing urine drug testing. The 20,479 creatinine results were categorized as hospitalized patients (H) and monitoring/compliance groups for pain management (P), legal (L) or recovery (R). Median creatinine concentrations (interquartile range, mg/dL) were significantly different (P creatinine concentrations were significantly lower in the R vs. L group (Pcreatinine concentration and may indicate participants' attempts to tamper with their drug test results through dilution means. © The Author 2016. Published by Oxford University Press. All rights reserved. For Permissions, please email: journals.permissions@oup.com.

Congruence between patients' preferred and perceived participation in medical decision-making: a review of the literature.

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Brom, Linda; Hopmans, Wendy; Pasman, H Roeline W; Timmermans, Danielle R M; Widdershoven, Guy A M; Onwuteaka-Philipsen, Bregje D

2014-04-03

Patients are increasingly expected and asked to be involved in health care decisions. In this decision-making process, preferences for participation are important. In this systematic review we aim to provide an overview the literature related to the congruence between patients' preferences and their perceived participation in medical decision-making. We also explore the direction of mismatched and outline factors associated with congruence. A systematic review was performed on patient participation in medical decision-making. Medline, PsycINFO, CINAHL, EMBASE and the Cochrane Library databases up to September 2012, were searched and all studies were rigorously critically appraised. In total 44 papers were included, they sampled contained 52 different patient samples. Mean of congruence between preference for and perceived participation in decision-making was 60% (49 and 70 representing 25th and 75th percentiles). If no congruence was found, of 36 patient samples most patients preferred more involvement and of 9 patient samples most patients preferred less involvement. Factors associated with preferences the most investigated were age and educational level. Younger patients preferred more often an active or shared role as did higher educated patients. This review suggests that a similar approach to all patients is not likely to meet patients' wishes, since preferences for participation vary among patients. Health care professionals should be sensitive to patients individual preferences and communicate about patients' participation wishes on a regular basis during their illness trajectory.

Participation of chronic patients in medical consultations: patients’ perceived efficacy, barriers and interest in support.

NARCIS (Netherlands)

Henselmans, I.; Heijmans, M.; Rademakers, J.; Dulmen, S. van

2015-01-01

Aims: Chronic patients are increasingly expected to participate actively in medical consultations. This study examined (i) patients' perceived efficacy and barriers to participation in consultations, (ii) patients' interest in communication support and (iii) correlates of perceived efficacy and

Patient participation, a prerequisite for care: A grounded theory study of healthcare professionals' perceptions of what participation means in a paediatric care context.

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Carlsson, Ing-Marie; Nygren, Jens M; Svedberg, Petra

2018-01-01

To explore healthcare professionals' perceptions of what patient participation means in a paediatric care context . A qualitative explorative design with grounded theory. Fifteen healthcare professionals who worked in paediatric care settings were either interviewed or asked open-ended questions in a survey, during December 2015-May 2016. Grounded theory was used as a method. The study results provide a theoretical conceptualization of what patient participation meant for healthcare professionals in paediatric care and how participation was enabled. The core category "participation a prerequisite for care" emerged as the main finding explaining the concept as ethical, practical and integrated in the care givers way of working. However, the concept was implicit in the organization. Four additional categories illustrated the healthcare professionals' different strategies used to enhance patient participation; "meeting each child where the child is," "building a relationship with the child," "showing respect for each individual child" and "making the most of the moment."

Mitochondrial disease patient motivations and barriers to participate in clinical trials.

Directory of Open Access Journals (Sweden)

Zarazuela Zolkipli-Cunningham

Full Text Available Clinical treatment trials are increasingly being designed in primary mitochondrial disease (PMD, a phenotypically and genetically heterogeneous collection of inherited multi- system energy deficiency disorders that lack effective therapy. We sought to identify motivating factors and barriers to clinical trial participation in PMD.A survey study was conducted in two independent mitochondrial disease subject cohorts. A discovery cohort invited subjects with well-defined biochemical or molecularly- confirmed PMD followed at a single medical center (CHOP, n = 30/67 (45% respondents. A replication cohort included self-identified PMD subjects in the Rare Disease Clinical Research Network (RDCRN national contact registry (n = 290/1119 (26% respondents. Five-point Likert scale responses were analyzed using descriptive and quantitative statistics. Experienced and prioritized symptoms for trial participation, and patient attitudes toward detailed aspects of clinical trial drug features and study design.PMD subjects experienced an average of 16 symptoms. Muscle weakness, chronic fatigue, and exercise intolerance were the lead symptoms encouraging trial participation. Motivating trial design factors included a self-administered study drug; vitamin, antioxidant, natural or plant-derivative; pills; daily treatment; guaranteed treatment access during and after study; short travel distances; and late-stage (phase 3 participation. Relative trial participation barriers included a new study drug; discontinuation of current medications; disease progression; daily phlebotomy; and requiring participant payment. Treatment trial type or design preferences were not influenced by population age (pediatric versus adult, prior research trial experience, or disease severity.These data are the first to convey clear PMD subject preferences and priorities to enable improved clinical treatment trial design that cuts across the complex diversity of disease. Partnering with rare

Patient-reported Symptom Experiences in Patients With Carcinoid Syndrome After Participation in a Study of Telotristat Etiprate: A Qualitative Interview Approach.

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Gelhorn, Heather L; Kulke, Matthew H; O'Dorisio, Thomas; Yang, Qi M; Jackson, Jessica; Jackson, Shanna; Boehm, Kristi A; Law, Linda; Kostelec, Jacqueline; Auguste, Priscilla; Lapuerta, Pablo

2016-04-01

Telotristat etiprate, a tryptophan hydroxylase inhibitor, was previously evaluated in a Phase II randomized, placebo-controlled clinical trial in patients with carcinoid syndrome (CS) and diarrhea not adequately controlled by octreotide. The objective of the current study was to characterize the symptom experiences of patients participating in that trial. Consenting patients participated in one-on-one, qualitative interviews focused on eliciting symptoms they had experienced in association with their CS diagnosis and recollection of symptom changes they experienced while participating in the Phase II trial. Among the 23 patients who participated in the previous 4-week dose-escalation study, 16 were eligible for interviews and 11 participated in the present study. The median time from study completion to the interview was 31 months; 4 of 11 patients were receiving telotristat etiprate in a follow-up, open-label trial at the time of interview. All of the patients (100%) described diarrhea as a symptom of CS, with effects on the emotional, social, and physical aspects of their lives. Improvement in diarrhea during the study was described by 82% of participants, and was very impactful in several patients. Results led to the design and implementation of a larger interview program in Phase III and helped to establish a definition of clinically meaningful change for the clinical development program. The diarrhea associated with CS can have a large impact on daily lives, and patient interviews can characterize and capture clinically meaningful improvements with treatment. ClinicalTrials.gov Identifier: NCT00853047. Copyright © 2016 The Authors. Published by Elsevier Inc. All rights reserved.

A qualitative exploration of patients' attitudes towards the 'Participate Inform Notice Know' (PINK) patient safety video.

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Pinto, Anna; Vincent, Charles; Darzi, Ara; Davis, Rachel

2013-02-01

To explore patients' attitudes towards the PINK video, a patient education video aimed at encouraging hospital patients' involvement in safety-relevant behaviours. Qualitative semi-structured interviews. Detailed field notes were taken during the interviews which were analysed using content analysis. One National Health System (NHS) teaching hospital based in London, UK. Thirty-six in-patients aged between 20 and 79 years, 18 of them males. The PINK video is a short animated educational video aimed at encouraging patients to be involved in the safety of their care during hospitalization. Patients' perceptions of how informative, relevant and acceptable the video is; attitudes towards participating in the recommended safety-related behaviours and; potential negative side effects of watching the video. Overall the video was received favourably among the interviewees. Commonly cited benefits included raising awareness and facilitating patients to be involved in their care during their hospital stay. More variability was found in participants' views with regard to the video's role as a patient safety enhancement tool. A number of suggestions for improvement of the video were provided relating to tailoring its content and design to meet the needs of individual patients and their circumstances. Educational videos such as PINK have significant potential to empower patients in the safety and quality of their care. However, efforts to implement patient safety educational videos in practice need to consider different patient groups' needs and characteristics instead of trying to adopt 'a one size fits all' approach.

Social Role Participation in Patients With Ankylosing Spondylitis: A Cross-Sectional Comparison With Population Controls.

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van Genderen, Simon; Plasqui, Guy; Landewé, Robert; Lacaille, Diane; Arends, Suzanne; van Gaalen, Floris; van der Heijde, Désirée; Heuft, Liesbeth; Luime, Jolanda; Spoorenberg, Anneke; Gignac, Monique; Boonen, Annelies

2016-12-01

Participation in social roles for persons with chronic disease is important for their quality of life, but interpretation of the data on participation is difficult in the absence of a benchmark. This study aimed to compare social role participation in patients with ankylosing spondylitis (AS) to population controls using the Social Role Participation Questionnaire (SRPQ). There were 246 AS patients and 510 population controls who completed the SRPQ, which assesses participation in 11 roles (with scores ranging 1-5) across 4 dimensions (importance, satisfaction with performance, satisfaction with time, and physical difficulty), and additionally ranked their 3 most important roles. The ranking of role importance, the SRPQ dimension scores, and the gap between importance and satisfaction with performance of roles were compared between patients and controls. Patients (62% male; mean ± SD age 51 ± 12 years) and controls (70% male; mean ± SD 42 ± 15 years) ranked intimate relationships, relationships with children/stepchildren/grandchildren, and employment as the most important roles. Compared to controls, patients gave higher scores on the SRPQ to importance (3.75 versus 3.43), but reported lower satisfaction with performance (3.19 versus 3.58) and greater physical difficulty (3.87 versus 4.67) (P ≤ 0.05 for all). The largest differences in gaps between importance and satisfaction with performance for patients compared to controls were seen in the physical leisure, hobbies, and traveling and vacation categories, in which patients assigned higher importance but reported especially low satisfaction. As society places increasing emphasis on individual responsibility to participate fully in social roles, the current data suggest that health care providers should pay more attention to participation restrictions experienced by patients with AS. © 2016, American College of Rheumatology.

Obstetric Patients Who Select and Those Who Refuse Medical Students' Participation in Their Care.

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Magrane, Diane; And Others

1994-01-01

A survey of 222 obstetrics patients assisted by medical clerkship students from the University of Vermont and 78 who refused student participation found privacy the primary motivation for refusal and a desire to contribute to students' education a primary reason for accepting student participation. Patients frequently erroneously anticipated the…

Comparison of participants and non-participants in a randomized study of prevention of depression in patients with acute coronary syndrome

DEFF Research Database (Denmark)

Hansen, Baiba; Hanash, Jamal A.; Rasmussen, Alice

2011-01-01

Background: The prevalence of depression and anxiety in patients after acute coronary syndrome (ACS) is higher than in the general population. In a study on prevention of post-ACS depression, more than half of eligible patients declined participation. Aims: The aim of this study was to evaluate...

Attitudes of Patients in Developing Countries Toward Participating in Clinical Trials: A Survey of Saudi Patients Attending Primary Health Care Services

Directory of Open Access Journals (Sweden)

Lateefa O. Al-Dakhil

2016-07-01

Full Text Available Objectives: Clinical trials are experimental projects that include patients as subjects. A number of benefits are directly associated with clinical trials. Healthcare processes and outcomes can be improved with the help of clinical trials. This study aimed to assess the attitudes and beliefs of patients about their contribution to and enrolment in clinical trials. Methods: A cross-sectional study design was used for data collection and analysis. A questionnaire was developed with six categories to derive effective outcomes. Results: Of the 2000 participants approached to take part in the study, 1081 agreed. The majority of the study population was female, well educated, and unaware of clinical trials. Only 324 subjects (30.0% had previously agreed to participate in a clinical trial. The majority (87.1% were motivated to participate in clinical trials due to religious aspects. However, fear of any risk was the principal reason (79.8% that reduced their motivation to participate. Conclusions: The results of this study revealed that patients in Saudi Arabia have a low awareness and are less willing to participate in clinical trials. Different motivational factors and awareness programs can be used to increase patient participation in the future.

Overcoming barriers to work participation for patients with postpoliomyelitis syndrome

NARCIS (Netherlands)

ten Katen, Kim; Beelen, Anita; Nollet, Frans; Frings-Dresen, Monique H. W.; Sluiter, Judith K.

2011-01-01

Purpose. This study aimed to explore the perceived work ability of patients with postpoliomyelitis syndrome (PPS), to identify barriers and factors that are impeding or conducive, respectively, to work participation, and to identify possible interventions. Methods. Qualitative cross-sectional

Early coordinated rehabilitation in acute phase after hip fracture - a model for increased patient participation.

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Asplin, Gillian; Carlsson, Gunnel; Zidén, Lena; Kjellby-Wendt, Gunilla

2017-10-17

Studies have shown that patients with hip fracture treated in a Comprehensive Geriatric Care (CGC) unit report better results in comparison to orthopaedic care. Furthermore, involving patients in their healthcare by encouraging patient participation can result in better quality of care and improved outcomes. To our knowledge no study has been performed comparing rehabilitation programmes within a CGC unit during the acute phase after hip fracture with focus on improving patients' perceived participation and subsequent effect on patients' function. A prospective, controlled, intervention performed in a CGC unit and compared with standard care. A total of 126 patients with hip fracture were recruited who were prior to fracture; community dwelling, mobile indoors and independent in personal care. Intervention Group (IG): 63 patients, mean age 82.0 years and Control Group (CG): 63 patients mean age 80.5 years. coordinated rehabilitation programme with early onset of patient participation and intensified occupational therapy and physiotherapy after hip fracture surgery. The primary outcome measure was self-reported patient participation at discharge. Secondary outcome measures were: TLS-BasicADL; Bergs Balance Scale (BBS); Falls Efficacy Scale FES(S); Short Physical Performance Battery (SPPB) and Timed Up and Go (TUG) at discharge and 1 month and ADL staircase for instrumental ADL at 1 month. At discharge a statistically significant greater number of patients in the IG reported higher levels of participation (p < 0.05) and independence in lower body hygiene (p < 0.05) and dressing (p < 0.001). There were however no statistically significant differences at discharge and 1 month between groups in functional balance and confidence, performance measures or risk for falls. This model of OT and PT coordinated inpatient rehabilitation had a positive effect on patients' perceived participation in their rehabilitation and ADL at discharge but did not appear to

"Why Do They Need to Check Me?" Patient Participation Through eHealth and the Doctor-Patient Relationship: Qualitative Study.

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Grünloh, Christiane; Myreteg, Gunilla; Cajander, Åsa; Rexhepi, Hanife

2018-01-15

Roles in the doctor-patient relationship are changing and patient participation in health care is increasingly emphasized. Electronic health (eHealth) services such as patient accessible electronic health records (PAEHRs) have been implemented to support patient participation. Little is known about practical use of PAEHR and its effect on roles of doctors and patients. This qualitative study aimed to investigate how physicians view the idea of patient participation, in particular in relation to the PAEHR system. Hereby, the paper aims to contribute to a deeper understanding of physicians' constructions of PAEHR, roles in the doctor-patient relationship, and levels and limits of involvement. A total of 12 semistructured interviews were conducted with physicians in different fields. Interviews were transcribed, translated, and a theoretically informed thematic analysis was performed. Two important aspects were identified that are related to the doctor-patient relationship: roles and involvement. The physicians viewed their role as being the ones to take on the responsibility, determining treatment options, and to be someone who should be trusted. In relation to the patient's role, lack of skills (technical or regarding medical jargon), motives to read, and patients' characteristics were aspects identified in the interviews. Patients were often referred to as static entities disregarding their potential to develop skills and knowledge over time. Involvement captures aspects that support or hinder patients to take an active role in their care. Literature of at least two decades suggests an overall agreement that the paternalistic approach in health care is inappropriate, and a collaborative process with patients should be adopted. Although the physicians in this study stated that they, in principle, were in favor of patient participation, the analysis found little support in their descriptions of their daily practice that participation is actualized. As seen from the

Patients' participation in decision-making in the medical field--'projectification' of patients in a neoliberal framed healthcare system.

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Glasdam, Stinne; Oeye, Christine; Thrysoee, Lars

2015-10-01

This article focuses on patients' participation in decision-making in meetings with healthcare professionals in a healthcare system, based on neoliberal regulations and ideas. Drawing on two constructed empirical cases, primarily from the perspective of patients, this article analyses and discusses the clinical practice around decision-making meetings within a Foucauldian perspective. Patients' participation in decision-making can be seen as an offshoot of respect for patient autonomy. A treatment must be chosen, when patients consult physicians. From the perspective of patients, there is a tendency for healthcare professionals to supply the patients with the information that they think are necessary for them to make their own decision. But patients do not always want to be a 'customer' in the healthcare system; they want to be a patient, consulting an expert for help and advice, which creates resistance to some parts of the decision-making process. Both professionals and patients are subject to the structural frame of the medical field, formed of both neoliberal framework and medical logic. The decision-making competence in relation to the choice of treatment is placed away from the professionals and seen as belonging to the patient. A 'projectification' of the patient occurs, whereby the patient becomes responsible for his/her choices in treatment and care and the professionals support him/her with knowledge, preferences, and alternative views, out of which he/she must make his/her own choices, and the responsibility for those choices now and in the future. At the same time, there is a tendency towards de-professionalization. In that light, participation of patients in decision-making can be regarded as a tacit governmentality strategy that shapes the location of responsibility between individual and society, and independent patients and healthcare professionals, despite the basically desirable, appropriate, and necessary idea of involving patients in their own

Patient participation in postoperative care activities in patients undergoing total knee replacement surgery: Multimedia Intervention for Managing patient Experience (MIME). Study protocol for a cluster randomised crossover trial.

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McDonall, Jo; de Steiger, Richard; Reynolds, John; Redley, Bernice; Livingston, Patricia; Botti, Mari

2016-07-18

Patient participation is an important indicator of quality care. Currently, there is little evidence to support the belief that participation in care is possible for patients during the acute postoperative period. Previous work indicates that there is very little opportunity for patients to participate in care in the acute context. Patients require both capability, in terms of having the required knowledge and understanding of how they can be involved in their care, and the opportunity, facilitated by clinicians, to engage in their acute postoperative care. This cluster randomised crossover trial aims to test whether a multimedia intervention improves patient participation in the acute postoperative context, as determined by pain intensity and recovery outcomes. A total of 240 patients admitted for primary total knee replacement surgery will be invited to participate in a cluster randomised, crossover trial and concurrent process evaluation in at least two wards at a major non-profit private hospital in Melbourne, Australia. Patients admitted to the intervention ward will receive the multimedia intervention daily from Day 1 to Day 5 (or day of discharge, if prior). The intervention will be delivered by nurses via an iPad™, comprising information on the goals of care for each day following surgery. Patients admitted to the control ward will receive usual care as determined by care pathways currently in use across the organization. The primary endpoint is the "worst pain experienced in the past 24 h" on Day 3 following TKR surgery. Pain intensity will be measured using the numerical rating scale. Secondary outcomes are interference of pain on activities of daily living, length of stay in hospital, function and pain following TKR surgery, overall satisfaction with hospitalisation, postoperative complications and hospital readmission. The results of this study will contribute to our understanding of the effectiveness of interventions that provide knowledge and

Safety of sports participation in patients with implantable cardioverter defibrillators: a survey of heart rhythm society members.

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Lampert, Rachel; Cannom, David; Olshansky, Brian

2006-01-01

Safety of Sports for ICD Patients. The safety of sports participation for patients with implantable cardioverter defibrillators (ICDs) is unknown, and recommendations among physicians may vary widely. The purposes of this study were to determine current practice among patients with ICDs and their physicians regarding sports participation, and to determine how many physicians have cared for patients who have sustained adverse events during sports participation. A survey was mailed to all 1,687 U.S. physician members of the Heart Rhythm Society. Among 614 respondent physicians, recommendations varied widely. Only 10% recommended avoidance of all sports more vigorous than golf. Seventy-six percent recommended avoidance of contact, and 45% recommend avoidance of competitive sports. Most (71%) based restrictions on patients' underlying heart disease. Regardless of recommendations, most physicians (71%) reported caring for patients who participated in sports, including many citing vigorous, competitive sports, most commonly cited were basketball, running, and skiing. ICD shocks during sports were common, cited by 40% of physicians. However, few adverse consequences were reported. One percent of physicians reported known injury to patient (all but 3 minor); 5%, injury to the ICD system, and weightlifting and golf. Physician recommendations for sports participation for patients with ICDs varies widely. Many patients with ICDs do participate in vigorous and even competitive sports. While shocks were common, significant adverse events were rare.

Patient participation in decision-making about cardiovascular preventive drugs - resistance as agency.

Science.gov (United States)

Hultberg, Josabeth; Rudebeck, Carl Edvard

2017-09-01

The aim of the study was to describe and explore patient agency through resistance in decision-making about cardiovascular preventive drugs in primary care. Six general practitioners from the southeast of Sweden audiorecorded 80 consultations. From these, 28 consultations with proposals from GPs for cardiovascular preventive drug treatments were chosen for theme-oriented discourse analysis. The study shows how patients participate in decision-making about cardiovascular preventive drug treatments through resistance in response to treatment proposals. Passive modes of resistance were withheld responses and minimal unmarked acknowledgements. Active modes were to ask questions, contest the address of an inclusive we, present an identity as a non-drugtaker, disclose non-adherence to drug treatments, and to present counterproposals. The active forms were also found in anticipation to treatment proposals from the GPs. Patients and GPs sometimes displayed mutual renouncement of responsibility for decision-making. The decision-making process appeared to expand both beyond a particular phase in the consultations and beyond the single consultation. The recognition of active and passive resistance from patients as one way of exerting agency may prove valuable when working for patient participation in clinical practice, education and research about patient-doctor communication about cardiovascular preventive medication. We propose particular attentiveness to patient agency through anticipatory resistance, patients' disclosures of non-adherence and presentations of themselves as non-drugtakers. The expansion of the decision-making process beyond single encounters points to the importance of continuity of care. KEY POINTS Guidelines recommend shared decision-making about cardiovascular preventive treatment. We need an understanding of how this is accomplished in actual consultations.This paper describes how patient agency in decision-making is displayed through different forms

Patients' need for information provision and perceived participation in decision making in doctor-patient consultation: Micro-cultural differences between French- and Italian-speaking Switzerland.

Science.gov (United States)

Camerini, Anne-Linda; Schulz, Peter J

2016-03-01

To explore micro-cultural differences in patients' need for information provision, perceived participation in decision making, and related concepts during the doctor-patient consultation between French- and Italian-speaking patients in Switzerland. In 2012, 153 French- and 120 Italian-speaking patients with chronic low back pain (cLBP) were surveyed on their need for information provision, perceived participation in decision making, cLBP knowledge, psychological empowerment, and trust in their doctor. T-tests and regression analyses with interaction terms were performed. Results show that French- and Italian-speaking patients significantly differed in their participation in decision making, with French-speaking patients reporting higher involvement. Need for information provision was related to empowerment among French- and to trust among Italian-speaking patients. For participation in decision making, trust was the only related concept among French-, and cLBP knowledge among Italian-speaking patients. Significant interaction terms indicate a moderation of micro-cultural background. Findings point towards differences in the relationships between individual patient characteristics (i.e. knowledge, empowerment) and relational doctor-patient characteristics (i.e. trust) and patients' need for information provision and participation in decision making between French- and Italian-speaking patients in Switzerland. Doctors should be aware of these differences when dealing with patients of different micro-cultural backgrounds. Copyright © 2015 Elsevier Ireland Ltd. All rights reserved.

Korean Cancer Patients' Awareness of Clinical Trials, Perceptions on the Benefit and Willingness to Participate.

Science.gov (United States)

Lim, Yoojoo; Lim, Jee Min; Jeong, Won Jae; Lee, Kyung-Hun; Keam, Bhumsuk; Kim, Tae-Yong; Kim, Tae Min; Han, Sae-Won; Oh, Do Youn; Kim, Dong-Wan; Kim, Tae-You; Heo, Dae Seog; Bang, Yung-Jue; Im, Seock-Ah

2017-10-01

The purpose of this study was to assess current levels of awareness of clinical trials (CTs), perceptions regarding their benefits and willingness to participate to CTs among Korean cancer patients. From December 2012 to August 2015, we distributed questionnaires to cancer patients receiving systemic anti-cancer therapy at Seoul National University Hospital, Seoul, Korea. A total of 397 out of 520 requested patients (76.3%) responded to the survey. Among the 397 patients, 62.5% were female and the median age was 52 years. Overall, 97.4% (387/397) answered that they have at least heard of CTs. When asked about their level of awareness, 23.8% (92/387) answered that they could more than roughly explain about CTs. The average visual analogue scale score of CT benefit in all patients was 6.43 (standard deviation, 2.20). Patients who were only familiar with the term without detailed knowledge of the contents had the least expectation of benefit from CTs (p=0.015). When asked about their willingness to participate in CTs, 56.7% (225/397) answered positively. Patients with higher levels of awareness of CTs showed higher willingness to participate (p awareness regarding CTs was positively related to the positive perception and willingness to participate. Although the general awareness of CTs was high, a relatively large proportion of patients did not have accurate knowledge; therefore, proper and accurate patient education is necessary.

Enhancing health communication outcomes among ethnic minority patients: The effects of the match between participation preferences and perceptions and doctor-patient concordance

NARCIS (Netherlands)

Schinkel, S.; Schouten, B.C.; Street, R.L.; van den Putte, B.; van Weert, J.C.M.

2016-01-01

Ethnic minority patients are less participative in medical consultations compared to ethnic majority patients. It is thus important to find effective strategies to enhance ethnic minority patients’ participation and improve subsequent health outcomes. This study therefore aimed to investigate the

Factors associated with non-participation and dropout among cancer patients in a cluster-randomised controlled trial.

Science.gov (United States)

Roick, J; Danker, H; Kersting, A; Briest, S; Dietrich, A; Dietz, A; Einenkel, J; Papsdorf, K; Lordick, F; Meixensberger, J; Mössner, J; Niederwieser, D; Prietzel, T; Schiefke, F; Stolzenburg, J-U; Wirtz, H; Singer, S

2018-01-01

We investigated the impact of demographic and disease related factors on non-participation and dropout in a cluster-randomised behavioural trial in cancer patients with measurements taken between hospitalisation and 6 months thereafter. The percentages of non-participation and dropout were documented at each time point. Factors considered to be potentially related with non-participation and dropout were as follows: age, sex, marital status, education, income, employment status, tumour site and stage of disease. Of 1,338 eligible patients, 24% declined participation at baseline. Non-participation was higher in older patients (Odds Ratio [OR] 2.1, CI: 0.6-0.9) and those with advanced disease (OR 2.0, CI: 0.1-1.3). Dropout by 6 months was 25%. Dropout was more frequent with increased age (OR 2.8, CI: 0.8-1.2), advanced disease (OR 3.0, CI: 1.0-1.2), being married (OR 2.4, CI 0.7-1.1) and less frequent with university education (OR 0.4, CI -1.3 to -0.8) and middle income (OR 0.4, CI -0.9 to -0.7). When planning clinical trials, it is important to be aware of patient groups at high risk of non-participation or dropout, for example older patients or those with advanced disease. Trial designs should consider their special needs to increase their rate of participation. © 2017 John Wiley & Sons Ltd.

What do our patients understand about their trial participation? Assessing patients' understanding of their informed consent consultation about randomised clinical trials.

Science.gov (United States)

Behrendt, C; Gölz, T; Roesler, C; Bertz, H; Wünsch, A

2011-02-01

Ethically, informed consent regarding randomised controlled trials (RCTs) should be understandable to patients. The patients can then give free consent or decline to participate in a RCT. Little is known about what patients really understand in consultations about RCTs. Cancer patients who were asked to participate in a randomised trial were surveyed using a semi-standardised interview developed by the authors. The interview addresses understanding, satisfaction and needs of the patients. The sample included eight patients who participated in a trial and two who declined. The data were analysed on the basis of Mayring's qualitative analysis. Patients' understanding of informed consent was less developed than anticipated, especially concerning key elements such as randomisation, content and procedure of RCTs. Analysing the result about satisfaction of the patients, most of the patients described their consultations as hectic and without advance notice. Health limitations due to cancer played a decisive role. However, most of the patients perceived their physician to be sympathetic. Analysing the needs of patients, they ask for a clear informed consent consultation with enough time and adequate advance notice. This study fills an important empirical research gap of what is ethically demanded in an RCT consultation and what is really understood by patients. The qualitative approach enabled us to obtain new results about cancer patients' understanding of informed consent, to clarify patients' needs and to develop new ideas to optimise the informed consent.

Breast cancer genetic counseling among Dutch patients from Turkish and Moroccan descent: participation determinants and perspectives of patients and healthcare professionals.

Science.gov (United States)

Baars, J E; van Dulmen, A M; Velthuizen, M E; van Riel, E; Ausems, M G E M

2017-04-01

Lower participation rates in cancer genetic counseling are observed among different ethnic minorities. The goal of our study is to gain insight into determinants of Turkish and Moroccan patients' participation in breast cancer genetic counseling and DNA testing, from the point of view of healthcare professionals and patients. Questionnaire-based telephone interviews about awareness, perceptions, and reasons for (non-) participation in cancer genetic counseling were conducted with 78 Dutch breast cancer patients from Turkish and Moroccan descent. The interviews were held in Arabic, Berber, Turkish, or Dutch by bilingual research assistants. Additionally, 14 breast cancer patients participated in one of two focus group meetings, and two focus groups were held with 11 healthcare professionals. SPSS and QSR Nvivo were used to examine the quantitative and qualitative data, respectively. Half of the total group of patients (N = 78) and 79% of patients eligible for genetic counseling and testing (N = 33) were aware of the possibility of genetic counseling. The most important determinants for nonparticipation in genetic counseling were experienced difficulties in patient-doctor communication, cultural factors (e.g., social norms), limited health literacy, limited knowledge of the family cancer history, and anxiety about cancer. Religious beliefs and knowing personal and family members' breast cancer risks were motives to obtain genetic counseling. Despite the fact that our study showed that Moroccan and Turkish women reported several personal motives to obtain genetic counseling and testing (GCT), patients and healthcare professionals experience significant language and health literacy difficulties, which make it harder to fully access health care such as genetic counseling and testing.

Patient characteristics and participation in a genetic study: a type 2 diabetes cohort.

Science.gov (United States)

Amiri, Loabat; Cassidy-Bushrow, Andrea E; Dakki, Heather; Li, Jia; Wells, Karen; Oliveria, Susan A; Yood, Marianne Ulcickas; Thomas, Abraham; Lanfear, David E

2014-01-01

Recruitment of large, diverse populations into genetic studies remains challenging. Potential strategies to overcome limitations include leveraging electronic health data and minimizing patient burden. We sought to describe the overall participation rate and identify characteristics associated with participation in a genetic substudy of patients with type 2 diabetes mellitus, in which patients were identified via electronic hospital data and asked to participate by providing DNA samples by mail. During a phone interview, participants (n = 455) were asked to take part in a genetic substudy. Subjects verbally consenting were mailed saliva collection kits and written consent forms. We examined demographic and clinical variables associated with verbal consent and DNA kit return using logistic regression. Overall, 90% (n = 410) verbally consented to the genetic substudy during interviews. However, of those consenting, only 70% returned the DNA kit (n = 287). Among those consenting, after covariate adjustment, male sex (odds ratio [OR], 1.70; 95% confidence interval [CI], 1.09-2.65), African American race (OR, 0.61; 95% CI, 0.39-0.95), hemoglobin A1c (HbA1c) (OR, 0.87; 95% CI, 0.75-1.00), and physical activity (OR, 0.58; 95% CI, 0.37-0.91) were significantly associated with DNA kit return. To our knowledge, we are the first to demonstrate an inverse association between HbA1c and participation in genetic research, potentially indicating a compliance-related trait needing further exploration. The DNA kit return rate being notably lower than the verbal consent rate suggests that the greater convenience of a telephone/mail-in process did not drastically enhance full participation. Direct comparison to in-person donation may be warranted.

Are performance-based measures predictive of work participation in patients with musculoskeletal disorders? A systematic review.

Science.gov (United States)

Kuijer, P P F M; Gouttebarge, V; Brouwer, S; Reneman, M F; Frings-Dresen, M H W

2012-02-01

Assessments of whether patients with musculoskeletal disorders (MSDs) can participate in work mainly consist of case history, physical examinations, and self-reports. Performance-based measures might add value in these assessments. This study answers the question: how well do performance-based measures predict work participation in patients with MSDs? A systematic literature search was performed to obtain longitudinal studies that used reliable performance-based measures to predict work participation in patients with MSDs. The following five sources of information were used to retrieve relevant studies: PubMed, Embase, AMA Guide to the Evaluation of Functional Ability, references of the included papers, and the expertise and personal file of the authors. A quality assessment specific for prognostic studies and an evidence synthesis were performed. Of the 1,230 retrieved studies, eighteen fulfilled the inclusion criteria. The studies included 4,113 patients, and the median follow-up period was 12 months. Twelve studies took possible confounders into account. Five studies were of good quality and thirteen of moderate quality. Two good-quality and all thirteen moderate-quality studies (83%) reported that performance-based measures were predictive of work participation. Two good-quality studies (11%) reported both an association and no association between performance-based measures and work participation. One good-quality study (6%) found no effect. A performance-based lifting test was used in fourteen studies and appeared to be predictive of work participation in thirteen studies. Strong evidence exists that a number of performance-based measures are predictive of work participation in patients with MSDs, especially lifting tests. Overall, the explained variance was modest.

Factors influencing participation in a randomized controlled resistance exercise intervention study in breast cancer patients during radiotherapy

International Nuclear Information System (INIS)

Gollhofer, Sandra M; Wiskemann, Joachim; Schmidt, Martina E; Klassen, Oliver; Ulrich, Cornelia M; Oelmann, Jan; Hof, Holger; Potthoff, Karin; Steindorf, Karen

2015-01-01

Over the past years knowledge about benefits of physical activity after cancer is evolving from randomized exercise intervention trials. However, it has been argued that results may be biased by selective participation. Therefore, we investigated factors influencing participation in a randomized exercise intervention trial for breast cancer patients. Non-metastatic breast cancer patients were systematically screened for a randomized exercise intervention trial on cancer-related fatigue. Participants and nonparticipants were compared concerning sociodemographic characteristics (age, marital status, living status, travel time to the training facility), clinical data (body-mass-index, tumor stage, tumor size and lymph node status, comorbidities, chemotherapy), fatigue, and physical activity. Reasons for participation or declination were recorded. 117 patients (52 participants, 65 nonparticipants) were evaluable for analysis. Multiple regression analyses revealed significantly higher odds to decline participation among patients with longer travel time (p = 0.0012), living alone (p = 0.039), with more comorbidities (0.031), previous chemotherapy (p = 0.0066), of age ≥ 70 years (p = 0.025), or being free of fatigue (p = 0.0007). No associations were found with BMI or physical activity. By far the most frequently reported reason for declination of participation was too long commuting time to the training facility. Willingness of breast cancer patients to participate in a randomized exercise intervention study differed by sociodemographic factors and health status. Neither current physical activity level nor BMI appeared to be selective for participation. Reduction of personal inconveniences and time effort, e.g. by decentralized training facilities or flexible training schedules, seem most promising for enhancing participation in exercise intervention trials. Registered at ClinicalTrials.gov: NCT01468766 (October 2011)

Investigating the Experiences of Childhood Cancer Patients and Parents Participating in Optional Nontherapeutic Clinical Research Studies in the UK.

Science.gov (United States)

Errington, Julie; Malik, Ghada; Evans, Julie; Baston, Jenny; Parry, Annie; Price, Lisa; Johnstone, Hina; Peters, Selena; Oram, Victoria; Howe, Karen; Whiteley, Emma; Tunnacliffe, Jane; Veal, Gareth J

2016-07-01

While the majority of childhood cancer clinical trials are treatment related, additional optional research investigations may be carried out that do not directly impact on treatment. It is essential that these studies are conducted ethically and that the experiences of families participating in these studies are as positive as possible. A questionnaire study was carried out to investigate the key factors that influence why families choose to participate in optional nontherapeutic research studies, the level of understanding of the trials involved, and the experiences of participation. A total of 100 participants from six UK centers were studied; 77 parents, 10 patients >16 years, and 13 patients aged 8-15 years. Ninety-seven percent of parents and 90% of patients felt that information provided prior to study consent was of the right length, with 52% of parents and 65% of patients fully understanding the information provided. Seventy-four percent of parents participated in research studies in order to "do something important", while 74% of patients participated "to help medical staff". Encouragingly, <5% of participants felt that their clinical care would be negatively affected if they did not participate. Positive aspects of participation included a perception of increased attention from medical staff. Negative aspects included spending longer periods in hospital and the requirement for additional blood samples. Ninety-six percent of parents and 87% of patients would participate in future studies. The study provides an insight into the views of childhood cancer patients and their parents participating in nontherapeutic clinical research studies. Overwhelmingly, the findings suggest that participation is seen as a positive experience. © 2016 The Authors. Pediatric Blood & Cancer, published by Wiley Periodicals, Inc.

Social Role Participation in Patients With Ankylosing Spondylitis: A Cross-Sectional Comparison With Population Controls

NARCIS (Netherlands)

van Genderen, Simon; Plasqui, Guy; Landewe, Robert; Lacaille, Diane; Arends, Suzanne; van Gaalen, Floris; van der Heijde, Desiree; Heuft, Liesbeth; Luime, Jolanda; Spoorenberg, Anneke; Gignac, Monique; Boonen, Annelies

2016-01-01

Objective. Participation in social roles for persons with chronic disease is important for their quality of life, but interpretation of the data on participation is difficult in the absence of a benchmark. This study aimed to compare social role participation in patients with ankylosing spondylitis

Social role participation in patients with ankylosing spondylitis. A cross-sectional comparison with population controls

NARCIS (Netherlands)

van Genderen, Simon; Plasqui, Guy; Landewé, Robert; Lacaille, Diane; Arends, Suzanne; van Gaalen, Floris; van der Heijde, Désirée; Heuft, Liesbeth; Luime, Jolanda; Spoorenberg, Anneke; Gignac, Monique A M; Boonen, Annelies

2016-01-01

OBJECTIVE: Social role participation of persons with a chronic disease is important for their lives, but interpretation of data on participation is difficult in the absence of a benchmark. This study aimed to compare social role participation in patients with ankylosing spondylitis (AS) to

Postoperative outcomes in bariatric surgical patients participating in an insurance-mandated preoperative weight management program.

Science.gov (United States)

Schneider, Andrew; Hutcheon, Deborah A; Hale, Allyson; Ewing, Joseph A; Miller, Megan; Scott, John D

2018-02-02

Many insurance companies require patient participation in a medically supervised weight management program (WMP) before offering approval for bariatric surgery. Clinical data surrounding benefits of participation are limited. To evaluate the relationship between preoperative insurance-mandated WMP participation and postoperative outcomes in bariatric surgery patients. Regional referral center and teaching hospital. A retrospective review of patients who underwent vertical sleeve gastrectomy or Roux-en-Y gastric bypass between January 2014 and January 2016 was performed. Patients (N = 354) were divided into 2 cohorts and analyzed according to presence (n = 266) or absence (n = 88) of an insurance-mandated WMP requirement. Primary endpoints included rate of follow-up and percent of excess weight loss (%EWL) at postoperative months 1, 3, 6, and 12. All patients, regardless of the insurance-mandated WMP requirement, followed a program-directed preoperative diet. The majority of patients with an insurance-mandated WMP requirement had private insurance (63.9%). Both patient groups experienced a similar proportion of readmissions and reoperations, rate of follow-up, and %EWL at 1, 3, 6, and 12 months (P = NS). Median operative duration and hospital length of stay were also similar between groups. Linear regression analysis revealed no significant improvement in %EWL at 12 months in the yes-WMP group. These data show that patients who participate in an insurance-mandated WMP in addition to completing a program-directed preoperative diet experience no significant benefit to rate of readmission, reoperation, follow-up, or %EWL up to 12 months postoperation. Our findings suggest that undergoing bariatric surgery without completing an insurance-mandated WMP is safe and effective. Copyright © 2018 American Society for Bariatric Surgery. Published by Elsevier Inc. All rights reserved.

Restrictions and satisfaction with participation in patients who are ADL-independent after an aneurysmal subarachnoid hemorrhage.

Science.gov (United States)

Huenges Wajer, Irene M C; Visser-Meily, Johanna M A; Greebe, Paut; Post, Marcel W M; Rinkel, Gabriel J E; van Zandvoort, Martine J E

2017-03-01

Most survivors of an aneurysmal subarachnoid hemorrhage (aSAH) are ADL-independent, but they often experience restrictions in (social) activities and, therefore, cannot regain their pre-morbid level of participation. In this study, participation restrictions and participation satisfaction experienced after aSAH were assessed. Moreover, possible predictors of participation after aSAH were examined to identify goals for rehabilitation. Participation restrictions experienced by a series of 67 patients visiting our SAH outpatient clinic were assessed as part of standard clinical care using the Participation Restrictions and Satisfaction sections of the Utrecht Scale for Evaluation of Rehabilitation Participation (USER-Participation) 6 months after aSAH. Cognitive impairments, cognitive and emotional complaints, and symptoms of depression and anxiety, assessed 10 weeks after aSAH, were examined as possible predictors of participation by means of linear regression analysis. Although patients were ADL-independent, 64% reported one or more participation restrictions and 60% were dissatisfied in one or more participation domains. Most commonly experienced restrictions concerned housekeeping, chores in and around the house, and physical exercise. Dissatisfaction was most often reported about outdoor activities, mobility, and work/housekeeping. The main predictors of participation restrictions as well as satisfaction with participation were cognitive complaints (subjective) (β = -.30, p = .03 and β = -.40, p = .002, respectively) and anxiety (β = .32, p = .02 and β = -.34, p = .007, respectively). Almost two-thirds of the ADL-independent patients experienced problems of participation 6 months after aSAH. Cognitive complaints (subjective) and anxiety symptoms showed the strongest association with participation restrictions and satisfaction. Cognitive rehabilitation and anxiety-reducing interventions may help to optimize rehabilitation and increase

Illness/treatment perceptions and overprotection as determinants of labour participation in renal patients.

NARCIS (Netherlands)

Jansen, D.; Heijmans, M.; Rijken, M.

2006-01-01

Objectives (1): To gain insight into the role of illness/treatment perceptions and overprotection in the labour participation and autonomy of patients with renal insufficiency and (2) to develop a protocol to assist renal patients to start, stay or reintegrate on the labour market. Methods (1):

COPE-ICD: Patient experience of participation in an ICD specific rehabilitation programme

DEFF Research Database (Denmark)

Berg, Selina Kikkenborg; Pedersen, Birthe Dagmar; Svendsen, Jesper Hastrup

2012-01-01

individualized care. Four themes emerged: Knowledge: patients gained much needed understanding; Physical attention: patients interpreted body signals and adjusted their exercise behaviour; Trust: patients regained trust, felt secure and dared to live again; Strategies of living: patients' coping was supported...... through reflection and professional dialogue, and they dealt with the risk of shock or death. CONCLUSION: Participating in an ICD-specific rehabilitation programme can make patients feel inspired and secure through individualized care. They discover that they have to rethink some of their strategies......PURPOSE: Evaluating rehabilitation programmes from the patient's perspective is much needed, as the patients are the most important stakeholders in the health care system. A comprehensive rehabilitation programme, COPE-ICD programme, consists of exercise training and nursing consultations during...

Patient perception of methadone dose adequacy in methadone maintenance treatment: The role of perceived participation in dosage decisions.

Science.gov (United States)

Trujols, Joan; González-Saiz, Francisco; Manresa, María José; Alcaraz, Saul; Batlle, Francesca; Duran-Sindreu, Santiago; Pérez de Los Cobos, José

2017-05-01

In clinical practice, methadone maintenance treatment (MMT) entails tailoring the methadone dose to the patient's specific needs, thereby individualizing treatment. The aim of this study was to identify the independent factors that may significantly explain methadone dose adequacy from the patient's perspective. Secondary analysis of data collected in a treatment satisfaction survey carried out among a representative sample of MMT patients (n=122) from the region of La Rioja (Spain). As part of the original study protocol, participants completed a comprehensive battery to assess satisfaction with MMT, psychological distress, opinion of methadone as a medication, participation in dosage decisions, and perception of dose adequacy. Multivariate binary logistic regression showed that the only variable independently associated with the likelihood of a patient perceiving methadone dose as inadequate was the variable perceived-participation in methadone dosage decisions (OR=0.538, 95% CI=0.349-0.828). Patient participation in methadone dosage decisions was predictive of perceived adequacy of methadone dose beyond the contribution of other socio-demographic, clinical, and MMT variables. Patient participation in methadone dosage decision-making is valuable for developing a genuinely patient-centred MMT. Copyright © 2016 Elsevier Ireland Ltd. All rights reserved.

Adjustment to cancer: exploring patients' experiences of participating in a psychodramatic group intervention.

Science.gov (United States)

Menichetti, J; Giusti, L; Fossati, I; Vegni, E

2016-09-01

The main purpose of the present study was to understand the subjective experience of patients adjusting to cancer by focusing on how that experience might be affected by participating in a psychodramatic group intervention. In-depth interviews using an interpretative-phenomenological approach were conducted with eight cancer patients involved in a psychodrama group. Four key themes were identified: (1) outside and inside relationships; (2) identities: nurturing other selves; (3) a feelings' gym: performing the internal world; and (4) many ends: mourning death and dying. Participation in cancer group using a psychodramatic approach provided positive results. In detail, the group setting: (1) favoured relationships in which it was possible to freely express oneself and (2) empowered patients in their feelings of being able to give and receive help; the psychodramatic approach: (1) supported the physical mobilisation of sense of agency and (2) permitted to deal with the grieving process. Cancer healthcare pathways would benefit from psychotherapeutic programmes using a similar approach, since psychodrama by actively involving body seems to works on areas that are often underwhelmed by other approaches, such as (i.e., physical mobilisation, body engagement, grieving adjustment). Psychodrama supports patients to achieve insights into their own possibilities to actively participate in their own life situations despite having cancer and undergoing treatment for it. © 2015 John Wiley & Sons Ltd.

Perspectives on Research Participation and Facilitation Among Dialysis Patients, Clinic Personnel, and Medical Providers: A Focus Group Study.

Science.gov (United States)

Flythe, Jennifer E; Narendra, Julia H; Dorough, Adeline; Oberlander, Jonathan; Ordish, Antoinette; Wilkie, Caroline; Dember, Laura M

2017-12-19

Most prospective studies involving individuals receiving maintenance dialysis have been small, and many have had poor clinical translatability. Research relevance can be enhanced through stakeholder engagement. However, little is known about dialysis clinic stakeholders' perceptions of research participation and facilitation. The objective of this study was to characterize the perspectives of dialysis clinic stakeholders (patients, clinic personnel, and medical providers) on: (1) research participation by patients and (2) research facilitation by clinic personnel and medical providers. We also sought to elucidate stakeholder preferences for research communication. Qualitative study. 7 focus groups (59 participants: 8 clinic managers, 14 nurses/patient care technicians, 8 social workers/dietitians, 11 nephrologists/advanced practice providers, and 18 patients/care partners) from 7 North Carolina dialysis clinics. Clinics and participants were purposively sampled. Focus groups were recorded and transcribed. Thematic analysis. We identified 11 themes that captured barriers to and facilitators of research participation by patients and research facilitation by clinic personnel and medical providers. We collapsed these themes into 4 categories to create an organizational framework for considering stakeholder (narrow research understanding, competing personal priorities, and low patient literacy and education levels), relationship (trust, buy-in, and altruistic motivations), research design (convenience, follow-up, and patient incentives), and dialysis clinic (professional demands, teamwork, and communication) aspects that may affect stakeholder interest in participating in or facilitating research. These themes appear to shape the degree of research readiness of a dialysis clinic environment. Participants preferred short research communications delivered in multiple formats. Potential selection bias and inclusion of English-speaking participants only. Our findings

Diagnostic conversion to bipolar disorder in unipolar depressed patients participating in trials on antidepressants.

Science.gov (United States)

Holmskov, J; Licht, R W; Andersen, K; Bjerregaard Stage, T; Mørkeberg Nilsson, F; Bjerregaard Stage, K; Valentin, J B; Bech, P; Ernst Nielsen, R

2017-02-01

In unipolar depressed patients participating in trials on antidepressants, we investigated if illness characteristics at baseline could predict conversion to bipolar disorder. A long-term register-based follow-up study of 290 unipolar depressed patients with a mean age of 50.8 years (SD=11.9) participating in three randomized trials on antidepressants conducted in the period 1985-1994. The independent effects of explanatory variables were examined by applying Cox regression analyses. The overall risk of conversion was 20.7%, with a mean follow-up time of 15.2 years per patient. The risk of conversion was associated with an increasing number of previous depressive episodes at baseline, [HR 1.18, 95% CI (1.10-1.26)]. No association with gender, age, age at first depressive episode, duration of baseline episode, subtype of depression or any of the investigated HAM-D subscales included was found. The patients were followed-up through the Danish Psychiatric Central Research Register, which resulted in inherent limitations such as possible misclassification of outcome. In a sample of middle-aged hospitalized unipolar depressed patients participating in trials on antidepressants, the risk of conversion was associated with the number of previous depressive episodes. Therefore, this study emphasizes that unipolar depressed patients experiencing a relatively high number of recurrences should be followed more closely, or at least be informed about the possible increased risk of conversion. Copyright © 2016. Published by Elsevier Masson SAS.

Virtual Reality to control active participation in a subacute stroke patient during robot-assisted gait training.

Science.gov (United States)

Bergmann, J; Krewer, C; Müller, F; Koenig, A; Riener, R

2011-01-01

Virtual Reality (VR) provides a promising medium to enrich robot assisted rehabilitation. VR applications present the opportunity to engage patients in therapy and control participation. The aim of this study was to investigate two strategies to control active participation of a stroke patient focusing on the involvement of the paretic leg in task solution. A subacute stroke patient with a severe hemiparesis performed two experiments on the driven gait orthosis Lokomat. Patient activity was quantified by weighted interaction torques measured in both legs (experiment A) and the paretic leg only (experiment B). The patient was able to successfully implement both the bilateral and unilateral control modality. Both control modes increased the motor output of the paretic leg, however the paretic leg control mode resulted in a much more differentiated regulation of the activity in the leg. Both control modes are appropriate approaches to enhance active participation and increase motor output in the paretic leg. Further research should evaluate the therapeutic benefit of patients with hemiparesis using the unilateral control mode depending on the severity of their impairment. © 2011 IEEE

Social support and subjective health complaints among patients participating in an occupational rehabilitation program

OpenAIRE

Øyeflaten, Irene; Gabriele, Jeanne M.; Fisher, Edwin B.; Eriksen, Hege R.

2010-01-01

Objectives: To examine differences in rehabilitation patients' social support received from rehabilitation staff and from support providers outside rehabilitation, and to examine the relationships between social support and the patients' reports of subjective health complaints (SHC). Methods: 131 patients (68 % females, mean age 45 years) participating in a 4-week, inpatient, occupational rehabilitation program were included. All patients completed questionnaires on demographic variables, SHC...

The importance of preoperative information for patient participation in colorectal surgery care

OpenAIRE

Aasa, Agneta; Hovbäck, Malin; Berterö, Carina

2013-01-01

Aims and objectives To identify and describe patients' experiences of a preoperative information session with a nurse, as part of the enhanced recovery after surgery (ERAS) concept, and its impact on patient participation in their own care. Background Enhanced recovery after surgery is a standardised, multimodal treatment programme for elective colorectal surgery, leading to faster recovery and shorter hospital stays via interprofessional collaboration. The ERAS concept is initiated for patie...

Patients' and their family members' experiences of participation in care following an acute exacerbation in chronic obstructive pulmonary disease

DEFF Research Database (Denmark)

Andersen, Ingrid Charlotte; Thomsen, Thora Grothe; Bruun, Poul

2017-01-01

, knowledge of the significance of patient and family participation for recovery and subsequent everyday life is still limited. DESIGN: This study adopted a longitudinal design informed by ethnographic fieldwork principles. METHODS: Participant observations and interviews with 15 patients and 12 family......AIM AND OBJECTIVES: To explore the experiences of patients with chronic obstructive pulmonary disease (COPD) and their family members relating to both participation in care during hospitalization for an acute exacerbation in COPD, and to the subsequent day-to-day care at home. BACKGROUND: When...... recovering from an exacerbation, the challenges associated with an unpredictable health condition dominate everyday life for patients and can involve their family members. Proper patient and family participation in care during discharge and follow-up can help patients to improve self-management. However...

A cooperative building up of care security: patient participation to risk management in radiotherapy

International Nuclear Information System (INIS)

Pernet, A.; Mollo, V.; Giraud, P.

2010-01-01

Based on observations of radiotherapy consultations, interviews of professionals (physicians and operators), of ex-patients and patients under treatment, and on analysis of questionnaires sent to patients, this study aimed at understanding how, and to which levels, participation of patients can optimize risk management. It outlines the major role of therapeutic information and education of patients, but also of health professionals, in order to reach a shared cooperative management of cares. Short communication

The relationship between coping, health competence and patient participation among patients with inactive inflammatory bowel disease.

Science.gov (United States)

Gandhi, Seema; Jedel, S; Hood, M M; Mutlu, E; Swanson, G; Keshavarzian, A

2014-05-01

Coping is an integral part of adjustment for patients with Inflammatory Bowel Disease but has not been well described in the literature. This study explored the relationship between coping, perceived health competence, patient preference for involvement in their treatment, depression and quality of life, particularly among patients with inactive disease (in remission). Subjects (n=70) with active and inactive IBD completed questionnaires, including the Inflammatory Bowel Disease Quality of Life Questionnaire, Beck Depression Inventory, Perceived Health Competence Scale and the Coping Inventory for Stressful Situations. The Harvey Bradshaw Index measured disease activity. Patients with inactive IBD demonstrated significantly more interest in participating in their treatment (pperceived health competence (p=.001), less depressive symptoms (pperceived control of their health, and exhibit less depression symptoms. Our findings may increase awareness of the importance of identifying coping strategies for IBD patients, including those in remission. © 2013.

Self-esteem, social participation, and quality of life in patients with multiple sclerosis

OpenAIRE

Mikula, Pavol; Nagyova, Iveta; Krokavcova, Martina; Vitkova, Marianna; Rosenberger, Jaroslav; Szilasiova, Jarmila; Gdovinova, Zuzana; Stewart, Roy E; Groothoff, Johan W; van Dijk, Jitse P

2017-01-01

The aim of this study is to explore whether self-esteem and social participation are associated with the physical and mental quality of life (Physical Component Summary, Mental Component Summary) and whether self-esteem can mediate the association between these variables. We collected information from 118 consecutive multiple sclerosis patients. Age, gender, disease duration, disability status, and participation were significant predictors of Physical Component Summary, explaining 55.4 percen...

Implementing an interprofessional patient safety learning initiative: insights from participants, project leads and steering committee members.

Science.gov (United States)

Jeffs, Lianne; Abramovich, Ilona Alex; Hayes, Chris; Smith, Orla; Tregunno, Deborah; Chan, Wai-Hin; Reeves, Scott

2013-11-01

Effective teamwork and interprofessional collaboration are vital for healthcare quality and safety; however, challenges persist in creating interprofessional teamwork and resilient professional teams. A study was undertaken to delineate perceptions of individuals involved with the implementation of an interprofessional patient safety competency-based intervention and intervention participants. The study employed a qualitative study design that triangulated data from interviews with six steering committee members and five members of the project team who developed and monitored the intervention and six focus groups with clinical team members who participated in the intervention and implemented local patient safety projects within a large teaching hospital in Canada. Our study findings reveal that healthcare professionals and support staff acquired patient safety competencies in an interprofessional context that can result in improved patient and work flow processes. However, key challenges exist including managing projects amidst competing priorities, lacking physician engagement and sustaining projects. Our findings point to leaders to provide opportunities for healthcare teams to engage in interprofessional teamwork and patient safety projects to improve quality of patient care. Further research efforts should examine the sustainability of interprofessional safety projects and how leaders can more fully engage the participation of all professions, specifically physicians.

Self-esteem, social participation, and quality of life in patients with multiple sclerosis.

Science.gov (United States)

Mikula, Pavol; Nagyova, Iveta; Krokavcova, Martina; Vitkova, Marianna; Rosenberger, Jaroslav; Szilasiova, Jarmila; Gdovinova, Zuzana; Stewart, Roy E; Groothoff, Johan W; van Dijk, Jitse P

2017-07-01

The aim of this study is to explore whether self-esteem and social participation are associated with the physical and mental quality of life (Physical Component Summary, Mental Component Summary) and whether self-esteem can mediate the association between these variables. We collected information from 118 consecutive multiple sclerosis patients. Age, gender, disease duration, disability status, and participation were significant predictors of Physical Component Summary, explaining 55.4 percent of the total variance. Self-esteem fully mediated the association between social participation and Mental Component Summary (estimate/standard error = -4.872; p educational programs.

42 CFR 418.54 - Condition of participation: Initial and comprehensive assessment of the patient.

Science.gov (United States)

2010-10-01

... patient's well-being, comfort, and dignity throughout the dying process. The comprehensive assessment must... and participate in his or her own care. (4) Imminence of death. (5) Severity of symptoms. (6) Drug... their ability to cope with the patient's death. Information gathered from the initial bereavement...

Patient perceptions that limit a community-based intervention to promote participation.

Science.gov (United States)

Towle, Angela; Godolphin, William; Manklow, Jennifer; Wiesinger, Holly

2003-07-01

A workshop designed to teach seniors to communicate more effectively with their physicians and enhance patient participation in the consultation was held in a community centre. A grounded theory analysis of follow-up telephone interviews provided examples of effectiveness but also revealed six categories of barriers to changing the pattern of established communication, particularly over the short term.

Breast cancer genetic counseling among Dutch patients from Turkish and Moroccan descent : participation determinants and perspectives of patients and healthcare professionals

NARCIS (Netherlands)

Baars, J E; van Dulmen, A M; Velthuizen, M E; van Riel, E; Ausems, M G E M

2017-01-01

Lower participation rates in cancer genetic counseling are observed among different ethnic minorities. The goal of our study is to gain insight into determinants of Turkish and Moroccan patients' participation in breast cancer genetic counseling and DNA testing, from the point of view of healthcare

Sports participation with arachnoid cysts.

Science.gov (United States)

Strahle, Jennifer; Selzer, Béla J; Geh, Ndi; Srinivasan, Dushyanth; Strahle, MaryKathryn; Martinez-Sosa, Meleine; Muraszko, Karin M; Garton, Hugh J L; Maher, Cormac O

2016-04-01

OBJECT There is currently no consensus on the safety of sports participation for patients with an intracranial arachnoid cyst (AC). The authors' goal was to define the risk of sports participation for children with this imaging finding. METHODS A survey was prospectively administered to 185 patients with ACs during a 46-month period at a single institution. Cyst size and location, treatment, sports participation, and any injuries were recorded. Eighty patients completed at least 1 subsequent survey following their initial entry into the registry, and these patients were included in a prospective registry with a mean prospective follow-up interval of 15.9 ± 8.8 months. RESULTS A total 112 patients with ACs participated in 261 sports for a cumulative duration of 4410 months or 1470 seasons. Of these, 94 patients participated in 190 contact sports for a cumulative duration of 2818 months or 939 seasons. There were no serious or catastrophic neurological injuries. Two patients presented with symptomatic subdural hygromas following minor sports injuries. In the prospective cohort, there were no neurological injuries CONCLUSIONS Permanent or catastrophic neurological injuries are very unusual in AC patients who participate in athletic activities. In most cases, sports participation by these patients is safe.

Effect of holistic cares with family participation on attitude and preoperative anxiety of patients

Directory of Open Access Journals (Sweden)

Madarshahian F

2015-02-01

Full Text Available Background and Objective: Responding to holistic needs of patients can reduce anxiety. The purpose of this study was to determine the effect of holistic cares with family participation on attitude and preoperative anxiety of patients. Materials and Method: This quasi-experimental study was conducted on all patients undergoing prostate surgery during 2012 at Emam Reza Hospital, Birjand, Iran. Therefore, 68 patients were assigned randomly to two groups of 34. In the intervention group, prior to each preoperative care needs of patients, such as covering the body, were determined through 5 questions and cares were provided accordingly with family participation. The control group received routine cares. Intervention outcomes were the scores of attitude and anxiety of patients. The attitude toward preoperative cares was measured using a 10-item researcher-made questionnaire at admission and before hospital discharge. Anxiety and preoperative information were measured using the Amsterdam Preoperative Anxiety and Information Scale at the beginning of hospitalization and before surgery. Data were analyzed using SPSS software version 16 and chi-square, and independent and paired t-tests. Results: Total score of mean attitude toward preoperative cares of the intervention group (42.44 ± 8.07 was higher than the control group (36.82 ± 9.32 (P = 0.01. Furthermore, the total mean preoperative anxiety score of the intervention group (14.08 ± 2.72 was lower than the control group (16.02 ± 1.56 (P < 0.001 and had reduced compared with pre-intervention (15.32 ± 2.60 (P < 0.001. Conclusion: Providing preoperative holistic cares with family participation was effective in creating positive attitude and reducing anxiety in anxious patients. Thus, its use is recommended in providing all medical and nursing cares.

Breast cancer genetic counseling among Dutch patients from Turkish and Moroccan descent: participation determinants, and perspectives of patients and healthcare professionals.

OpenAIRE

Baars, J.E.; Dulmen, S. van; Veldhuizen, M.E. van; Riel, E. van; Ausems, M.G.E.M.

2017-01-01

Abstract Lower participation rates in cancer genetic counseling are observed among different ethnic minorities. The goal of our study is to gain insight into determinants of Turkish and Moroccan patients’ participation in breast cancer genetic counseling and DNA testing, from the point of view of healthcare professionals and patients. Questionnaire-based telephone interviews about awareness, perceptions, and reasons for (non-) participation in cancer genetic counseling were conducted with 78 ...

Participation, Power, Critique: Constructing a Standard for Electronic Patient Records

DEFF Research Database (Denmark)

Bossen, Claus

2006-01-01

  The scope of participatory design is discussed through the case of a national standard for electronic patient records (EPR) in Denmark. Currently within participatory design, the relationship between participatory methods and techniques on the one hand and critical and emancipatory aims...... on the other hand is discussed. Some argue that participation in itself entails a strive towards democracy, others argue that the tendency to focus upon tools, techniques and the arena of single projects should be supplemented with emancipatory aims, such as technology assessment and critique of dominance....... These issues are discussed through the controversies around the test in late 2004 of a prototype application based on BEHR, a standard developed from 1999 to 2005 for EPRs. I argue that participation is valuable, but that the scope of participatory design should also include critical conceptualizations...

Diagnostic conversion to bipolar disorder in unipolar depressed patients participating in trials on antidepressants

DEFF Research Database (Denmark)

Holmskov, J; Licht, R W; Andersen, K

2017-01-01

OBJECTIVE: In unipolar depressed patients participating in trials on antidepressants, we investigated if illness characteristics at baseline could predict conversion to bipolar disorder. METHOD: A long-term register-based follow-up study of 290 unipolar depressed patients with a mean age of 50.......8 years (SD=11.9) participating in three randomized trials on antidepressants conducted in the period 1985-1994. The independent effects of explanatory variables were examined by applying Cox regression analyses. RESULTS: The overall risk of conversion was 20.7%, with a mean follow-up time of 15.2 years...... per patient. The risk of conversion was associated with an increasing number of previous depressive episodes at baseline, [HR 1.18, 95% CI (1.10-1.26)]. No association with gender, age, age at first depressive episode, duration of baseline episode, subtype of depression or any of the investigated HAM...

Virtual Patients in a Behavioral Medicine Massive Open Online Course (MOOC): A Qualitative and Quantitative Analysis of Participants' Perceptions.

Science.gov (United States)

Berman, Anne H; Biguet, Gabriele; Stathakarou, Natalia; Westin-Hägglöf, Beata; Jeding, Kerstin; McGrath, Cormac; Zary, Nabil; Kononowicz, Andrzej A

2017-10-01

The purpose of this article is to explore learners' perceptions of using virtual patients in a behavioral medicine Massive Open Online Course (MOOCs) and thereby describe innovative ways of disseminating knowledge in health-related areas. A 5-week MOOC on behavioral medicine was hosted on the edX platform. The authors developed two branched virtual patients consisting of video recordings of a live standardized patient, with multiple clinical decision points and narration unfolding depending on learners' choices. Students interacted with the virtual patients to treat stress and sleep problems. Answers to the exit survey and participant comments from the discussion forum were analyzed qualitatively and quantitatively. In total, 19,236 participants enrolled in the MOOC, out of which 740 received the final certificate. The virtual patients were completed by 2317 and 1640 participants respectively. Among survey respondents (n = 442), 83.1% agreed that the virtual patient exercise was helpful. The qualitative analysis resulted in themes covering what it was like to work with the virtual patient, with subthemes on learner-centered education, emotions/eustress, game comparisons, what the participants learned, what surprised them, how confident participants felt about applying interventions in practice, suggestions for improvement, and previous experiences of virtual patients. Students were enthusiastic about interacting with the virtual patients as a means to apply new knowledge about behavioral medicine interventions. The most common suggestion was to incorporate more interactive cases with various levels of complexity. Further research should include patient outcomes and focus on interprofessional aspects of learning with virtual patients in a MOOC.

The willingness and actual situation of Chinese cancer patients and their family members participating in medical decision-making.

Science.gov (United States)

Zhang, Jie; Yang, Dan; Deng, Yaotiao; Wang, Ying; Deng, Lei; Luo, Xinmei; Zhong, Wuning; Liu, Jie; Wang, Yuqing; Jiang, Yu

2015-12-01

In China, not only patients and physicians are involved in medical decision-making (MDM) but also the patients' family members. The objective is to investigate the willingness and actual situation of cancer patients and their family members participating in the MDM process. In this cross-sectional study, questionnaires were administered to 247 pairs of cancer inpatients and their relatives. Information regarding participants' willingness and actual experience during the decision-making process was documented. Eligible participants were cancer inpatients or their relatives, 18 years of age or older, and informed of the cancer diagnosis. All the patients should have received chemotherapy. The effective response rate was 72.9% (180/247). Over half of the patients (53.3%) and family members (57.8%) were willing to be part of the MDM process. In contrast, only 35.0% of patients and 46.1% of family members actually experienced this process (p = 0.001 and p = 0.011, respectively). Fewer family members (42.2%) than patients (53.3%) believed that patients should be involved in the MDM process (p family (odds ratio 2.577, 95% CI 1.198-5.556, p = 0.015) experienced more involvement in MDM. Although more than half of Chinese cancer patients and family members wanted to be part of MDM, the actual participation was below their expectation. Majority of family members do not want the patients to be involved in the process of MDM. Copyright © 2015 John Wiley & Sons, Ltd.

Participation in sports groups for patients with cardiac problems : An experimental study

NARCIS (Netherlands)

Schaperclaus, G; deGreef, M; Rispens, P; deCalonne, D; Landsman, M; Lie, KI; Oudhof, J

1997-01-01

An experimental study was carried out to determine the influence of participation in Sports Groups for Patients with Cardiac Problems (SPCP) on physical and mental fitness and on risk factor level after myocardial infarction. SPCP members (n = 74; 67 men and 7 women) were compared with Nonsporting

The influence of sport participation on physical function in patients with osteoarthritis during and after exercise therapy.

NARCIS (Netherlands)

Veenhof, C.; Perry, S.; Lucas, C.

2012-01-01

Introduction: The objectives of this study were to investigate 1) in which sports activities patients with osteoarthritis (OA) participate, 2) the cross sectional differences in functional outcome between sports participants and nonsports participants and 3) the influence of regular sports

The Experience of Surrogate Decision Makers on Being Approached for Consent for Patient Participation in Research. A Multicenter Study.

Science.gov (United States)

Burns, Karen E A; Prats, Clara Juando; Maione, Maria; Lanceta, Mary; Zubrinich, Celia; Jeffs, Lianne; Smith, Orla M

2017-02-01

Recruitment in critical care research differs from other contexts in important ways: patients lack decision-making capacity, uncertainty exists regarding patient prognosis, and critical illnesses are often associated with appreciable morbidity and mortality. We aimed to describe the experiences of surrogate decision makers (SDMs) in being approached for consent for critically ill patients to participate in research. A multicenter, qualitative study involving semistructured interviews with 26 SDMs, who provided or declined surrogate consent for research participation, at 5 Canadian centers nested within a multicenter observational study of research recruitment practices. Transcripts were reviewed by three qualitative researchers, and data were analyzed using grounded theory and a narrative critical analysis. SDMs were guided by an overarching desire for the patient to live. Surrogate research decision-making involved three sequential stages: (1) being approached; (2) reflecting on participation; and (3) making a decision. In stage 1, SDMs identified factors (their expectations, how they were approached, the attributes of the person approaching, and study risks and benefits) that characterized their consent encounter and affirmed a preference to be approached in person. If SDMs perceived the risk of participation to be too high or felt patients may not benefit from participation, they did not contemplate further. In stage 2, SDMs who knew the patient's wishes or had a deeper understanding of research prioritized the patient's wishes and the perceived benefits of participation. Without this information, SDMs prioritized obtaining more and better care for the patient, considered what was in their mutual best interests, and valued healthcare professional's knowledge. Trust in healthcare professionals was essential to proceeding further. In stage 3, SDMs considered six factors in rendering decisions. SDMs engaged in three sequential stages and considered six factors in

The influence of sport participation on physical function in patients with osteoarthritis during and after exercise therapy.

NARCIS (Netherlands)

Perry, S.; Lucas, C.; Veenhof, C.

2012-01-01

Purpose: The objectives of this study were 1. to investigate in which sports activities patients with osteoarthritis (OA) participate, 2. the cross sectional differences in functional outcome between sport participators (SP) and non-sport participators (N-SP) and 3. the influence of sport

The impact of patient participation direct enhanced service on patient reference groups in primary care: a qualitative study.

Science.gov (United States)

Pollard, Lorraine; Agarwal, Shona; Harrad, Fawn; Lester, Louise; Cross, Ainsley; Wray, Paula; Smith, Gordon; Locke, Anthony; Sinfield, Paul

2014-01-01

NHS policy documents continue to make a wide-ranging commitment to patient involvement. The Patient Participation Direct Enhanced Service (PP-DES), launched in 2011, aimed to ensure patients are involved in decisions about the range and quality of services provided and commissioned by their practice through patient reference groups (PRGs). The aim of this exploratory study is to review the impact of the PP-DES (2011-13) on a sample of PRGs and assess how far it has facilitated their involvement in decisions about the services of their general practices. A qualitative methods design, using semi- structured interviews and focus groups, was employed to explore the experiences and views of GP practice staff (n = 24), PRG members (n = 80) at 12 GP practices, and other stakeholders (n = 4). Wide variation in the role and remit of the participating PRGs was found, which broadly ranged from activities to improve practice resources to supporting health promotion activities. The majority of PRG members were unfamiliar with the PP-DES scheme and its aims and purpose. Stakeholders and practice staff felt strongly that the main success of the PP-DES was that it had led to an increase in the number of PRGs being established in the locality. The PP-DES scheme has been a catalyst to establish PRGs. However, the picture was mixed in terms of the PRGs involvement in decisions about the services provided at their general practice as there was wide variation in the PRGs role and remit. The financial incentive alone, provided via the DES scheme, did not secure greater depth of PRG activity and power, however, as social factors were identified as playing an important role in PRGs' level of participation in decision making. Many PRGs have to become more firmly established before they are involved as partners in commissioning decisions at their practice.

Aerobic capacity explains physical functioning and participation in patients with multiple sclerosis-related fatigue

OpenAIRE

Emma Rosalie Driehuis; Lizanne Eva van den Akker; Vincent de Groot; Heleen Beckerman

2018-01-01

Objective: To investigate whether aerobic capacity explains the level of self-reported physical activity, physical functioning, and participation and autonomy in daily living in persons with multiple sclerosis-related fatigue. Design: A cross-sectional study. Patients: Sixty-two participants with multiple sclerosis-related fatigue. Methods: Aerobic capacity was measured with a leg ergometer and was expressed as maximal oxygen uptake (VO2max, in ...

The Impact of Participation in Online Cancer Communities on Patient Reported Outcomes: Systematic Review.

Science.gov (United States)

van Eenbergen, Mies C; van de Poll-Franse, Lonneke V; Heine, Peter; Mols, Floortje

2017-09-28

In recent years, the question of how patients' participating in online communities affects various patient reported outcomes (PROs) has been investigated in several ways. This study aimed to systematically review all relevant literature identified using key search terms, with regard to, first, changes in PROs for cancer patients who participate in online communities and, second, the characteristics of patients who report such effects. A computerized search of the literature via PubMed (MEDLINE), PsycINFO (5 and 4 stars), Cochrane Central Register of Controlled Trials, and ScienceDirect was performed. Last search was conducted in June 2017. Studies with the following terms were included: (cancer patient) and (support group or health communities) and (online or Internet). A total of 21 studies were included and independently assessed by 2 investigators using an 11-item quality checklist. The methodological quality of the selected studies varied: 12 were of high quality, eight were of adequate quality, and only one was of low quality. Most of the respondents were women (about 80%), most with breast cancer; their mean age was 50 years. The patients who were active in online support groups were mostly younger and more highly educated than the nonusers. The investigated PROs included general well-being (ie, mood and health), anxiety, depression, quality of life, posttraumatic growth, and cancer-related concerns. Only marginal effects-that is, PRO improvements-were found; in most cases they were insignificant, and in some cases they were contradictory. The main shortcoming of this kind of study is the lack of methodological instruments for reliable measurements. Furthermore, some patients who participate in online communities or interact with peers via Internet do not expect to measure changes in their PROs. If cancer survivors want to meet other survivors and share information or get support, online communities can be a trustworthy and reliable platform to facilitate

Understanding male cancer patients' barriers to participating in cancer rehabilitation.

Science.gov (United States)

Handberg, C; Lomborg, K; Nielsen, C V; Oliffe, J L; Midtgaard, J

2015-11-01

The aim was to describe male cancer survivors' barriers towards participation in cancer rehabilitation as a means to guiding future targeted men's cancer rehabilitation. Symbolic Interactionism along with the interpretive descriptive methodology guided the study of 35 male cancer survivors representing seven cancer types. Data were generated through a 5-month fieldwork study comprising participant observations, semi-structured individual interviews and informal conversations. The analyses revealed two overarching findings shedding light on male cancer survivors' barriers to rehabilitation: 'Fear of losing control' and 'Striving for normality'. While 'Fear of losing control' signified what the men believed rehabilitation would invoke: 'Reduced manliness', 'Sympathy and dependency' and 'Confrontation with death', 'Striving for normality' was based on what the men believed rehabilitation would hinder: 'Autonomy and purpose', 'Solidarity and fellowship' and 'Forget and move on'. This study of male cancer survivors' and cancer rehabilitation documents how masculine ideals may constitute barriers for participation in rehabilitation and provides insights about why men are underrepresented in rehabilitation. The findings can guide practice to develop research-based rehabilitation approaches focused on preserving control and normality. Further empirical evidence is needed to: (1) explore the conduct of health professionals' towards male cancer patients and (2) address gender inequalities in cancer rehabilitation. © 2015 John Wiley & Sons Ltd.

42 CFR 484.18 - Condition of participation: Acceptance of patients, plan of care, and medical supervision.

Science.gov (United States)

2010-10-01

..., and medical supervision. Patients are accepted for treatment on the basis of a reasonable expectation that the patient's medical, nursing, and social needs can be met adequately by the agency in the... 42 Public Health 5 2010-10-01 2010-10-01 false Condition of participation: Acceptance of patients...

Mindfulness-based stress reduction for breast cancer patients: a mixed method study on what patients experience as a suitable stage to participate

NARCIS (Netherlands)

Bisseling, Else M.; Schellekens, Melanie P. J.; Jansen, Ellen T. M.; van Laarhoven, Hanneke W. M.; Prins, Judith B.; Speckens, Anne E. M.

2017-01-01

Breast cancer is associated with high levels of psychological distress. Mindfulness-based stress reduction (MBSR) has proven to be effective in reducing distress in cancer patients. In several studies, patients who are currently undergoing somatic anticancer treatment are excluded from participating

Intensive care unit nurses' perceptions of patient participation in the acute phase of chronic obstructive pulmonary disease exacerbation: an interview study.

Science.gov (United States)

Kvangarsnes, Marit; Torheim, Henny; Hole, Torstein; Öhlund, Lennart S

2013-02-01

To report a study conducted to explore intensive care unit nurses' perceptions of patient participation in the acute phase of chronic obstructive pulmonary disease exacerbation. An acute exacerbation is a life-threatening situation, which patients often consider to be extremely frightening. Healthcare personnel exercise considerable power in this situation, which challenges general professional notions of patient participation. Critical discourse analysis. In the autumn of 2009, three focus group interviews with experienced intensive care nurses were conducted at two hospitals in western Norway. Two groups had six participants each, and one group had five (N = 17). The transcribed interviews were analysed by means of critical discourse analysis. The intensive care nurses said that an exacerbation is often an extreme situation in which healthcare personnel are exercising a high degree of control and power over patients. Patient participation during exacerbation often takes the form of non-involvement. The participating nurses attached great importance to taking a sensitive approach when meeting patients. The nurses experienced challenging ethical dilemmas. This study shows that patient participation should not be understood in universal terms, but rather in relation to a specific setting and the interactions that occur in this setting. Healthcare personnel must develop skill, understanding, and competence to meet these challenging ethical dilemmas. A collaborative inter-professional approach between physicians and nurses is needed to meet the patients' demand for involvement. © 2012 Blackwell Publishing Ltd.

Attitudes and expectations of patients with neuromuscular diseases about their participation in a clinical trial.

Science.gov (United States)

Gargiulo, M; Herson, A; Michon, C C; Hogrel, J Y; Doppler, V; Laloui, K; Herson, S; Payan, C; Eymard, B; Laforêt, P

2013-01-01

This study aimed to gain a better understanding of the psychological impact of participating in a clinical trial for patients with Pompe disease (Acid Maltase Deficiency). Attitudes and expectations of adult patients with neuromuscular diseases regarding medical trials are as yet unreported. In order to learn about the psychological consequences of participating in a clinical trial, we conducted a prospective assessment of patients with late-onset Pompe Disease, a rare genetic condition, for which no treatment had been available before. This psychological study was carried out as an ancillary study to the randomized double-blind placebo-controlled trial described elsewhere (van der Ploeg et al., 2010). We assessed patients (n=8) at inclusion, and at 12 and 18 months for six psychological dimensions: depression (Beck Depression Inventory, BDI), hopelessness (Beck Hopelessness Scale, BHS), anxiety (STAI A-B), quality of life (Whoqol-26), social adjustment (S.A.S-self-report) and locus of control (IPC Levenson). We produced a self-administered questionnaire in order to assess the attitudes, motivations and expectations of patients during the trial. At 12 months, mean social adjustment (SAS-SR, P=0.02) had improved, and at 18 months mean depression score had improved as well (BDI, P=0.03). The quality of life of patients (Whoqol-26) remained unchanged. Throughout the study, patients were more likely to have an internal locus of control than an external one (IPC Levenson). The self-administered questionnaire showed that patients' expectations were disproportionate compared to the medical information they had received starting the trial. For all patients, the first motivation for being enrolled in a clinical trial was "to help research", for half of them the motivation was to "improve their health". Whether patients believed to be part of one group or another (placebo or treatment) depended on their subjective perception of improvement during the trial. Given the small

Influence of promised rewards on conflict resolution in healthy participants and patients with Parkinson's disease.

Science.gov (United States)

Houvenaghel, Jean-François; Duprez, Joan; Naudet, Florian; Argaud, Soizic; Dondaine, Thibaut; Drapier, Sophie; Robert, Gabriel Hadrien; Drapier, Dominique; Vérin, Marc; Sauleau, Paul

2016-08-15

The influence of promised rewards on conflict resolution processes is not clearly defined in the literature, and the underlying mechanisms are poorly understood. Some studies have shown no effect of reward, while others have demonstrated a beneficial influence. In addition, although the basal ganglia are known to play a critical role in the association between motivation and cognition, the influence of promised rewards on conflict resolution processes in Parkinson's disease (PD) has received little attention. In this context, we assessed the influence of promised rewards on both impulse activation and suppression in 36 healthy participants and 36 patients with PD, using a rewarded Simon task. Analysis of performances revealed that promised rewards worsened the overall congruence effect, but only in healthy participants. Although the incentive context did not modulate the congruence effect in patients, by using the activation-suppression model, we were able to show that promised rewards did influence impulse suppression in patients-but not in healthy participants. Suppressing inappropriate response activation in an incentive context appears to be harder in medically treated Parkinson's disease. This indicates that incentive motivation can modulate at least one cognitive process involved in cognitive action control in patients with medically treated PD. The activation-suppression model provides essential additional information concerning the influence of promised rewards on conflict resolution processes in a pathological population. Copyright © 2016 Elsevier B.V. All rights reserved.

Permitting patients to pay for participation in clinical trials: the advent of the P4 trial.

Science.gov (United States)

Shaw, David; de Wert, Guido; Dondorp, Wybo; Townend, David; Bos, Gerard; van Gelder, Michel

2017-06-01

In this article we explore the ethical issues raised by permitting patients to pay for participation (P4) in clinical trials, and discuss whether there are any categorical objections to this practice. We address key considerations concerning payment for participation in trials, including patient autonomy, risk/benefit and justice, taking account of two previous critiques of the ethics of P4. We conclude that such trials could be ethical under certain strict conditions, but only if other potential sources of funding have first been explored or are unavailable.

A qualitative study on mindfulness-based stress reduction for breast cancer patients: how women experience participating with fellow patients

NARCIS (Netherlands)

Schellekens, Melanie P. J.; Jansen, Ellen T. M.; Willemse, Heidi H. M. A.; van Laarhoven, Hanneke W. M.; Prins, Judith B.; Speckens, Anne E. M.

2016-01-01

Peer support groups for cancer patients show mixed findings regarding effectiveness on psychological wellbeing. When embedded in a psychosocial intervention, such as mindfulness-based stress reduction (MBSR), peer support might be of more benefit to participants. This study is a qualitative

Asymptomatic Chiari Type I malformation: should patients be advised against participation in contact sports?

Science.gov (United States)

Spencer, Robert; Leach, Paul

2017-08-01

Chiari type I malformation (CM-I) is characterised by caudal displacement of the cerebellar tonsils through the foramen magnum, crowding the craniocervical junction. It is being increasingly diagnosed in asymptomatic patients due to the widespread availability of MRI, and there are case reports of these patients suffering sudden death or neurological injury following head or neck trauma, raising the issue of whether they should be prohibited from contact sport participation, given the likelihood of frequent trauma. General neurosurgical opinion is that patients who are symptomatic and those with an associated spinal cord syrinx should be offered foramen magnum decompression, however asymptomatic patients without syringomyelia are not offered this in the majority of cases. The authors performed a full review of the published literature, including all case reports, case series, studies and literature reviews regarding CM-I and either contact sports or trauma, excluding patients that had undergone surgical intervention and those becoming symptomatic in circumstances other than head or neck trauma. 21 case reports of CM-I patients deteriorating following trauma were identified, including four cases of sudden death following head or neck injury. However, studies of large samples of CM-I patients are yet to capture an incident of sudden death or acute neurological deterioration, suggesting that the risk is very low. CM-I patients may have an increased risk of concussion and post-concussion syndrome compared to the background population however. Overall, the authors feel that there should be no restriction of sports participation for CM-I patients, but a discussion to make them and their families aware of the possible increased risks is important.

Emotional approach coping and the effects of online peer-led support group participation among patients with breast cancer: a longitudinal study.

Science.gov (United States)

Batenburg, Anika; Das, Enny

2014-11-28

Previous research on the effects of online peer support on psychological well-being of patients with cancer showed mixed findings. There is a need for longitudinal studies explaining if and when online peer-led support groups are beneficial. How patients cope with emotions that come along with the cancer diagnosis might influence effectiveness of online participation. Emotional approach coping is a construct encompassing the intentional use of emotional processing and emotional expression in efforts to manage adverse circumstances. In this longitudinal study, we hypothesize that mixed findings in previous research are partly caused by individual differences in coping with emotions, which may moderate the effects of online support group participation on patients' well-being. A total of 133 Dutch patients with breast cancer filled out a baseline (T0) and a follow-up (T1, 6 months later) questionnaire assessing intensity of online participation within the online support community, emotional approach coping (ie, actively processing and expressing emotions), and psychological well-being (depression, emotional well-being, and breast cancer-related concerns). There were 109 patients who visited an online support community at both points in time. Repeated measures ANOVAs assessed change in well-being over time. Results showed 3-way interactions of time, online intensity of participation, and emotional approach coping on emotional well-being (F1,89=4.232, P=.04, η(2) ρ=.045) and depression (F1,88=8.167, P=.005, η(2) ρ=.085). Online support group participation increased emotional well-being over time for patients who scored low on emotional approach coping at T0, provided that they were highly active online. Patients who were highly active online with a high score on emotional approach coping reported no change in sense of well-being, but showed the highest score on well-being overall. Participating less frequently online was only beneficial for patients who scored high

Symptoms of Depression and Anxiety as Barriers to Participation in Cardiac Rehabilitation Programs Among Arab and Jewish Patients in Israel.

Science.gov (United States)

Vilchinsky, Noa; Reges, Orna; Leibowitz, Morton; Khaskia, Abdulrahim; Mosseri, Morris; Kark, Jeremy D

2018-05-01

Despite its proven efficacy, low participation rates in cardiac prevention and rehabilitation programs (CPRPs) prevail worldwide, especially among ethnic minorities. This is strongly evident in Israel's Arab minority. Since psychological distress has been found to be associated with CPRP participation and minorities are subjected to higher levels of distress, it is plausible that distress may be an important barrier for CPRP participation among minority patients. The current prospective study assessed the contribution of depression and anxiety symptoms to participation in a CPRP after acute coronary syndrome, both in the enrollment phase and when considering adherence over time, among Jewish (majority) and Arab (minority) patients in Israel. Patients were interviewed during hospitalization about their emotional status and at a 6-mo follow-up concerning participation in a CPRP. Analyses were performed on 397 patients. The Brief Symptom Inventory was used. Logistic regression modeling was applied. Symptoms of depression, but not anxiety, were frequently observed among Arab patients compared with their Jewish counterparts. In analyses adjusted for age, sex, ethnicity, and sociodemographic and clinical characteristics, having symptoms of anxiety was associated with less participation in a CPRP, evident for both Jews and Arabs; this association was less evident for symptoms of depression. Multivariable adjusted models did not show a significant association of symptoms of anxiety or depression with adherence in a CPRP. Accounting for psychological distress did not reduce the sharp difference between Jews and Arabs in CPRP participation. Symptoms of distress may serve as barriers to CPRP participation, regardless of ethnic origin.

Dietary Protein Intake in a Multi-ethnic Asian Population of Healthy Participants and Chronic Kidney Disease Patients.

Science.gov (United States)

Teo, Boon Wee; Toh, Qi Chun; Xu, Hui; Yang, Adonsia Y T; Lin, Tingxuan; Li, Jialiang; Lee, Evan J C

2015-04-01

Clinical practice guidelines recommend different levels of dietary protein intake in predialysis chronic kidney disease (CKD) patients. It is unknown how effectively these recommendations perform in a multi-ethnic Asian population, with varied cultural beliefs and diets. We assess the profi le of protein intake in a multi-ethnic Asian population, comparing healthy participants and CKD patients. We analysed the 24-hour urine collections of the Asian Kidney Disease Study (AKDS) and the Singapore Kidney Function Study (SKFS) to estimate total protein intake (TPI; g/day). We calculated ideal body weight (IDW; kg): 22.99 × height2 (m). Standard statistical tests were applied where appropriate, and linear regression was used to assess associations of continuous variables with protein intake. There were 232 CKD patients and 103 healthy participants with 35.5% diabetics. The mean TPI in healthy participants was 58.89 ± 18.42 and the mean TPI in CKD patients was 53.64 ± 19.39. By US National Kidney Foundation (NKF) guidelines, 29/232 (12.5%) of CKD patients with measured glomerular filtration rate (GFR) patients had TPI-IDW >0.75g/kg/ day. By American Dietetic Association (ADA) guidelines, 34.7% (44/127) of CKD patients with GFR patients with GFR protein intake of between 0.3 to 0.5 g/kg/day. A total of 21.9% (25/114) of diabetic CKD patients had protein intake between 0.8 to 0.9 g/kg/day. On average, the protein intake of most CKD patients exceeds the recommendations of guidelines. Diabetic CKD patients should aim to have higher protein intakes.

Congruence between patients' preferred and perceived participation in medical decision-making: a review of the literature

NARCIS (Netherlands)

Brom, L.; Hopmans, W.; Pasman, H.R.W.; Timmermans, D.R.M.; Widdershoven, G.A.M.; Onwuteaka-Philipsen, B.D.

2014-01-01

Background: Patients are increasingly expected and asked to be involved in health care decisions. In this decision-making process, preferences for participation are important. In this systematic review we aim to provide an overview the literature related to the congruence between patients'

Patients or volunteers? The impact of motivation for trial participation on the efficacy of patient decision Aids: a secondary analysis of a Cochrane systematic review.

Science.gov (United States)

Brown, James G; Joyce, Kerry E; Stacey, Dawn; Thomson, Richard G

2015-05-01

Efficacy of patient decision aids (PtDAs) may be influenced by trial participants' identity either as patients seeking to benefit personally from involvement or as volunteers supporting the research effort. To determine if study characteristics indicative of participants' trial identity might influence PtDA efficacy. We undertook exploratory subgroup meta-analysis of the 2011 Cochrane review of PtDAs, including trials that compared PtDA with usual care for treatment decisions. We extracted data on whether participants initiated the care pathway, setting, practitioner interactions, and 6 outcome variables (knowledge, risk perception, decisional conflict, feeling informed, feeling clear about values, and participation). The main subgroup analysis categorized trials as "volunteerism" or "patienthood" on the basis of whether participants initiated the care pathway. A supplementary subgroup analysis categorized trials on the basis of whether any volunteerism factors were present (participants had not initiated the care pathway, had attended a research setting, or had a face-to-face interaction with a researcher). Twenty-nine trials were included. Compared with volunteerism trials, pooled effect sizes were higher in patienthood trials (where participants initiated the care pathway) for knowledge, decisional conflict, feeling informed, feeling clear, and participation. The subgroup difference was statistically significant for knowledge only (P = 0.03). When trials were compared on the basis of whether volunteerism factors were present, knowledge was significantly greater in patienthood trials (P < 0.001), but there was otherwise no consistent pattern of differences in effects across outcomes. There is a tendency toward greater PtDA efficacy in trials in which participants initiate the pathway of care. Knowledge acquisition appears to be greater in trials where participants are predominantly patients rather than volunteers. © The Author(s) 2015.

Access to Mobile Communication Technology and Willingness to Participate in Automated Telemedicine Calls Among Chronically Ill Patients in Honduras

Science.gov (United States)

Mendoza-Avelares, Milton O.; Milton, Evan C.; Lange, Ilta; Fajardo, Roosevelt

2010-01-01

Abstract Objectives: Patients in underdeveloped countries may be left behind by advances in telehealthcare. We surveyed chronically ill patients with low incomes in Honduras to measure their use of mobile technologies and willingness to participate in mobile disease management support. Materials and Methods: 624 chronically ill primary care patients in Honduras were surveyed. We examined variation in telephone access across groups defined by patients' sociodemographic characteristics, diagnoses, and access to care. Logistic regression was used to identify independent correlates of patients' interest in automated telephonic support for disease management. Results: Participants had limited education (mean 4.8 years), and 65% were unemployed. Eighty-four percent had telephone access, and 78% had cell phones. Most respondents had voicemail (61%) and text messaging (58%). Mobile technologies were particularly common among patients who had to forego clinic visits and medications due to cost concerns (each p 80%) reported that they would be willing to receive automated calls focused on appointment reminders, medication adherence, health status monitoring, and self-care education. Patients were more likely to be willing to participate in automated telemedicine services if they had to cancel a clinic appointment due to transportation problems or forego medication due to cost pressures. Conclusions: Even in this poor region of Honduras, most chronically ill patients have access to mobile technology, and most are willing to participate in automated telephone disease management support. Given barriers to in-person care, new models of mobile healthcare should be developed for chronically ill patients in developing countries. PMID:21062234

Sports participation with Chiari I malformation.

Science.gov (United States)

Strahle, Jennifer; Geh, Ndi; Selzer, Béla J; Bower, Regina; Himedan, Mai; Strahle, MaryKathryn; Wetjen, Nicholas M; Muraszko, Karin M; Garton, Hugh J L; Maher, Cormac O

2016-04-01

OBJECT There is currently no consensus on the safety of sports participation for patients with Chiari I malformation (CM-I). The authors' goal was to define the risk of sports participation for children with the imaging finding of CM-I. METHODS A prospective survey was administered to 503 CM-I patients at 2 sites over a 46-month period. Data were gathered on imaging characteristics, treatment, sports participation, and any sport-related injuries. Additionally, 81 patients completed at least 1 subsequent survey following their initial entry into the registry and were included in a prospective group, with a mean prospective follow-up period of 11 months. RESULTS Of the 503 CM-I patients, 328 participated in sports for a cumulative duration of 4641 seasons; 205 of these patients participated in contact sports. There were no serious or catastrophic neurological injuries. One patient had temporary extremity paresthesias that resolved within hours, and this was not definitely considered to be related to the CM-I. In the prospective cohort, there were no permanent neurological injuries. CONCLUSIONS No permanent or catastrophic neurological injuries were observed in CM-I patients participating in athletic activities. The authors believe that the risk of such injuries is low and that, in most cases, sports participation by children with CM-I is safe.

Fatigue in patients with Juvenile Idiopathic Arthritis: relationship to perceived health, physical health, self-efficacy, and participation.

Science.gov (United States)

Armbrust, Wineke; Lelieveld, Otto H T M; Tuinstra, Jolanda; Wulffraat, Nico M; Bos, G J F Joyce; Cappon, Jeannette; van Rossum, Marion A J; Sauer, Pieter J J; Hagedoorn, Mariët

2016-12-06

Fatigue is common in patients with JIA and affects daily life negatively. We assessed the presence and severity of fatigue in patients with JIA, including factors presumed associated with fatigue (e.g., disease activity, disability, pain, physical activity, exercise capacity, and self-efficacy), and whether fatigue is related to participation in physical education classes, school attendance, and sports frequency. The current study used baseline data of 80 patients with JIA (age 8-13) who participated in an intervention aimed at promoting physical activity. Primary outcome measurements were fatigue, assessed using the Pediatric-Quality-of-Life-Inventory (PedsQl)-Fatigue-scale and energy level assessed using a VAS scale. Other outcome measurements were disease activity (VAS Physician Global Assessment Scale), disability (Childhood Health Assessment Questionnaire), physical activity (accelerometer), exercise capacity (Bruce treadmill test), self-efficacy (Childhood Arthritis Self-Efficacy Scale), and participation (self-report). Sixty percent of patients with JIA suffered from daily low-energy levels; 27% suffered from very low-energy levels more than half the week. Low energy levels were best predicted by disability and low physical activity. Fatigue measured with the PEDsQL was higher compared to the control-population. Disability and low self-efficacy were main predictors of fatigue. Self-efficacy was a predictor of fatigue but did not act as moderator. Fatigue was a predictor for sports frequency but not for school attendance. Fatigue is a significant problem for JIA patients. Interventions aimed at reducing perceived disability, stimulating physical activity, and enhancing self-efficacy might reduce fatigue and thereby enhance participation. Trial number ISRCTN92733069.

Assessment of clinical trial participant patient satisfaction: a call to action.

Science.gov (United States)

Pflugeisen, Bethann Mangel; Rebar, Stacie; Reedy, Anne; Pierce, Roslyn; Amoroso, Paul J

2016-10-06

As patient satisfaction scores become increasingly relevant in today's health care market, we sought to evaluate satisfaction of the unique subset of patients enrolling in clinical trials in a research facility embedded within a community hospital system. We developed and deployed a patient satisfaction survey tailored to clinical trial patients who consented to and/or completed a clinical trial in our research institute in the prior year. The survey was distributed to 222 patients. Likert scale responses were analyzed using top box and percentile rank procedures. Correlation analysis was used to evaluate associations between the clinical trial experience and intent to return to our system for routine care. Ninety surveys were returned in the 6 months following the mailing for a 41 % response rate; the bulk of these (N = 81) were returned within 6 weeks of the mailing. The questions with the highest ranking responses were related to interactions with staff (84th percentile or higher). Fifty-one point one percent of patients (64th percentile) strongly agreed that they would seek future care in our system. Patient intent to return to the provider seen during the clinical trial was most highly correlated with intent to seek future care within our system (r = 0.54, p system-based clinical trials and the relationship between clinical trial participation and perception of the healthcare system as a desirable resource for routine medical care. We argue that this work is invaluable to the research community and submit a call to action to our peers to begin systematic evaluation of clinical trial patient satisfaction.

Association of competitive and recreational sport participation with cardiac events in patients with arrhythmogenic right ventricular cardiomyopathy

DEFF Research Database (Denmark)

Ruwald, Anne-Christine; Marcus, Frank; Estes, N A Mark

2015-01-01

AIMS: It has been proposed that competitive sport increases the risk of ventricular tachyarrhythmias (VTA) and death in patients with arrhythmogenic right-ventricular cardiomyopathy (ARVC). However, it is unknown whether this only applies to competitive sport or if recreational sports activity also...... three categories of sports participation: competitive (n = 41), recreational (n = 48), and inactive (n = 19). Competitive sport was associated with a significantly higher risk of VTA/death when compared with both recreational sport [HR = 1.99 (1.21-3.28), P = 0.007] and inactive patients [HR = 2.05 (1.......07-3.91), P = 0.030]. No increased risk of VTA/death was associated with recreational sport when compared with patients who were inactive [HR = 1.03 (0.54-1.97), P = 0.930]. Symptoms developed at an earlier age in patients who participated in competitive sport (30 ± 12 years), when compared with patients who...

Why do patients choose (not) to participate in an exercise trial during adjuvant chemotherapy for breast cancer?

NARCIS (Netherlands)

van Waart, H.; van Harten, W.H.; Buffart, L.M.; Sonke, G.S.; Stuiver, M.M.; Aaronson, N.K.

2016-01-01

Objective: Only between 25% and 50% of patients invited to participate in clinical trial-based physical exercise programs during cancer treatment agree to do so. The purpose of this study was to identify factors associated significantly with the decision (not) to participate in a randomized

Why do patients choose (not) to participate in an exercise trial during adjuvant chemotherapy for breast cancer?

NARCIS (Netherlands)

van Waart, Hanna; van Harten, Willem H.; Buffart, Laurien M.; Sonke, Gabe S.; Stuiver, Martijn M.; Aaronson, Neil K.

2015-01-01

Objective Only between 25% and 50% of patients invited to participate in clinical trial-based physical exercise programs during cancer treatment agree to do so. The purpose of this study was to identify factors associated significantly with the decision (not) to participate in a randomized

A review of patient and carer participation and the use of qualitative research in the development of core outcome sets.

Science.gov (United States)

Jones, Janet E; Jones, Laura L; Keeley, Thomas J H; Calvert, Melanie J; Mathers, Jonathan

2017-01-01

To be meaningful, a core outcome set (COS) should be relevant to all stakeholders including patients and carers. This review aimed to explore the methods by which patients and carers have been included as participants in COS development exercises and, in particular, the use and reporting of qualitative methods. In August 2015, a search of the Core Outcomes Measures in Effectiveness Trials (COMET) database was undertaken to identify papers involving patients and carers in COS development. Data were extracted to identify the data collection methods used in COS development, the number of health professionals, patients and carers participating in these, and the reported details of qualitative research undertaken. Fifty-nine papers reporting patient and carer participation were included in the review, ten of which reported using qualitative methods. Although patients and carers participated in outcome elicitation for inclusion in COS processes, health professionals tended to dominate the prioritisation exercises. Of the ten qualitative papers, only three were reported as a clear pre-designed part of a COS process. Qualitative data were collected using interviews, focus groups or a combination of these. None of the qualitative papers reported an underpinning methodological framework and details regarding data saturation, reflexivity and resource use associated with data collection were often poorly reported. Five papers reported difficulty in achieving a diverse sample of participants and two reported that a large and varied range of outcomes were often identified by participants making subsequent rating and ranking difficult. Consideration of the best way to include patients and carers throughout the COS development process is needed. Additionally, further work is required to assess the potential role of qualitative methods in COS, to explore the knowledge produced by different qualitative data collection methods, and to evaluate the time and resources required to

Why do patients choose (not) to participate in an exercise trial during adjuvant chemotherapy for breast cancer?

NARCIS (Netherlands)

van Waart, Hanna; van Harten, Wim H.; Buffart, Laurien M.; Sonke, Gabe S.; Stuiver, Martijn M.; Aaronson, Neil K.

2016-01-01

Only between 25% and 50% of patients invited to participate in clinical trial-based physical exercise programs during cancer treatment agree to do so. The purpose of this study was to identify factors associated significantly with the decision (not) to participate in a randomized controlled trial of

Does aerobic training alleviate fatigue and improve societal participation in patients with multiple sclerosis? A randomized controlled trial.

Science.gov (United States)

Heine, Martin; Verschuren, Olaf; Hoogervorst, Erwin Lj; van Munster, Erik; Hacking, Hub Ga; Visser-Meily, Anne; Twisk, Jos Wr; Beckerman, Heleen; de Groot, Vincent; Kwakkel, Gert

2017-10-01

Evidence supporting the effectiveness of aerobic training, specific for fatigue, in severely fatigued patients with multiple sclerosis (MS) is lacking. To estimate the effectiveness of aerobic training on MS-related fatigue and societal participation in ambulant patients with severe MS-related fatigue. Patients ( N = 90) with severe MS-related fatigue were allocated to 16-week aerobic training or control intervention. Primary outcomes were perceived fatigue (Checklist Individual Strength (CIS20r) fatigue subscale) and societal participation. An improvement of ⩾8 points on the CIS20r fatigue subscale was considered clinically relevant. Outcomes were assessed by a blinded observer at baseline, 2, 4, 6 and 12 months. Of the 89 patients that started treatment (median Expanded Disability Status Scale (interquartile range), 3.0 (2.0-3.6); mean CIS20r fatigue subscale (standard deviation (SD)), 42.6 (8.0)), 43 received aerobic training and 46 received the control intervention. A significant post-intervention between-group mean difference (MD) on the CIS20r fatigue subscale of 4.708 (95% confidence interval (CI) = 1.003-8.412; p  = 0.014) points was found in favour of aerobic training that, however, was not sustained during follow-up. No effect was found on societal participation. Aerobic training in MS patients with severe fatigue does not lead to a clinically meaningful reduction in fatigue or societal participation when compared to a low-intensity control intervention.

Fatigue in patients with COPD participating in a pulmonary rehabilitation program

Directory of Open Access Journals (Sweden)

Cindy J Wong

2010-09-01

Full Text Available Cindy J Wong1, Donna Goodridge1, Darcy D Marciniuk2, Donna Rennie1,31College of Nursing, 2College of Medicine, 3Canadian Centre for Health and Safety in Agriculture, University of Saskatchewan, Saskatoon, CanadaBackground: Fatigue is a distressing, complex, multidimensional sensation common in individuals with chronic obstructive pulmonary disease (COPD. While fatigue negatively impacts functional performance and quality of life, there has been little study of the fatigue that affects participants in pulmonary rehabilitation programs. The purpose of this study was to examine the emotional, behavioral, cognitive, and physical dimensions of fatigue and their relationships to dyspnea, mental health, sleep, and physiologic factors.Patients and methods: A convenience sample of 42 pulmonary rehabilitation participants with COPD completed self-report questionnaires which measured dimensions of fatigue using the Multidimensional Fatigue Inventory, anxiety and depression using the Hospital Anxiety and Depression Scale, and sleep quality using the Pittsburgh Sleep Quality Index. Data on other clinical variables were abstracted from pulmonary rehabilitation program health records.Results: Almost all (95.3% participants experienced high levels of physical fatigue. High levels of fatigue were also reported for the dimensions of reduced activity (88.1%, reduced motivation (83.3%, mental fatigue (69.9%, and general fatigue (54.5%. Close to half (42.9% of participants reported symptoms of anxiety, while almost one quarter (21.4% reported depressive symptoms. Age was related to the fatigue dimensions of reduced activity (ρ = 0.43, P < 0.01 and reduced motivation (ρ = 0.31, P < 0.05. Anxiety was related to reduced motivation (ρ = -0.47, P < 0.01. Fatigue was not associated with symptoms of depression, sleep quality, gender, supplemental oxygen use, smoking status, or Medical Research Council dyspnea scores.Conclusions: Fatigue (particularly the physical and

Evaluating the utility of a patient decision aid for potential participants of a prostate cancer trial (RAVES-TROG 08.03)

International Nuclear Information System (INIS)

Sundaresan, Puma; Turner, Sandra; Kneebone, Andrew; Pearse, Maria; Butow, Phyllis

2011-01-01

Randomised controlled trials (RCTs) can be hampered by poor patient accrual and retention. Decision aids (DAs) containing simple, evidence-based information, may assist patients with decision-making regarding trial participation. The current DA was of use for 95% of participants. Further evaluation of the DA in a RCT is currently underway.

Patient perspectives of participating in the cardiac CopenHeartRFA rehabilitation program for patients treated with ablation for atrial fibrillation

DEFF Research Database (Denmark)

Risom, Signe Stelling; Lind, Johanne; J McCabe, Pamela

2018-01-01

. As part of the evaluation of the CopenHeartRFA trial, both quantitative and qualitative data were collected. The intervention was delivered by a multidisciplinary team. Aim: This study aimed to understand the experience of patients treated for AF with ablation who participated in the CopenHeartRFA cardiac....... The interviews were analyzed individually by two researchers and themes were constructed and discussed. Results: The sample included 10 participants, mean age 54.6 years. Four categories were identified and labeled: 1) strengthening belief in one’s own physical capacity and survival; 2) still struggling...

Medical students' situational motivation to participate in simulation based team training is predicted by attitudes to patient safety.

Science.gov (United States)

Escher, Cecilia; Creutzfeldt, Johan; Meurling, Lisbet; Hedman, Leif; Kjellin, Ann; Felländer-Tsai, Li

2017-02-10

Patient safety education, as well as the safety climate at clinical rotations, has an impact on students' attitudes. We explored medical students' self-reported motivation to participate in simulation-based teamwork training (SBTT), with the hypothesis that high scores in patient safety attitudes would promote motivation to SBTT and that intrinsic motivation would increase after training. In a prospective cohort study we explored Swedish medical students' attitudes to patient safety, their motivation to participate in SBTT and how motivation was affected by the training. The setting was an integrated SBTT course during the surgical semester that focused on non-technical skills and safe treatment of surgical emergencies. Data was collected using the Situational Motivation Scale (SIMS) and the Attitudes to Patient Safety Questionnaire (APSQ). We found a positive correlation between students' individual patient safety attitudes and self-reported motivation (identified regulation) to participate in SBTT. We also found that intrinsic motivation increased after training. Female students in our study scored higher than males regarding some of the APSQ sub-scores and the entire group scored higher or on par with comparable international samples. In order to enable safe practice and professionalism in healthcare, students' engagement in patient safety education is important. Our finding that students' patient safety attitudes show a positive correlation to motivation and that intrinsic motivation increases after training underpins patient safety climate and integrated teaching of patient safety issues at medical schools in order to help students develop the knowledge, skills and attitudes required for safe practice.

Two simple strategies (adding a logo or a senior faculty's signature) failed to improve patient participation rates in a cohort study: randomized trial

NARCIS (Netherlands)

van Wonderen, Karina E.; Mohrs, Jacob; Jff, Machteld I.; Bindels, Patrick J. E.; ter Riet, Gerben

2008-01-01

Background: Patient participation in research studies is often difficult to achieve, and efforts to increase participation rates fail frequently. Given the paucity of evidence on interventions aimed at improving patient participation, we conducted a randomized trial. Objectives: The first was to

Glutathione system participation in thoracic aneurysms from patients with Marfan syndrome.

Science.gov (United States)

Zúñiga-Muñoz, Alejandra María; Pérez-Torres, Israel; Guarner-Lans, Verónica; Núñez-Garrido, Elías; Velázquez Espejel, Rodrigo; Huesca-Gómez, Claudia; Gamboa-Ávila, Ricardo; Soto, María Elena

2017-05-01

Aortic dilatation in Marfan syndrome (MFS) is progressive. It is associated with oxidative stress and endothelial dysfunction that contribute to the early acute dissection of the vessel and can result in rupture of the aorta and sudden death. We evaluated the participation of the glutathione (GSH) system, which could be involved in the mechanisms that promote the formation and progression of the aortic aneurysms in MFS patients. Aortic aneurysm tissue was obtained during chest surgery from eight control subjects and 14 MFS patients. Spectrophotometrical determination of activity of glutathione peroxidase (GPx), glutathione-S-transferase (GST), glutathione reductase (GR), lipid peroxidation (LPO) index, carbonylation, total antioxidant capacity (TAC), and concentration of reduced and oxidized glutathione (GSH and GSSG respectively), was performed in the homogenate from aortic aneurysm tissue. LPO index, carbonylation, TGF-β1, and GR activity were increased in MFS patients (p < 0.04), while TAC, GSH/GSSG ratio, GPx, and GST activity were significantly decreased (p < 0.04). The depletion of GSH, in spite of the elevated activity of GR, not only diminished the activity of GSH-depend GST and GPx, but increased LPO, carbonylation and decreased TAC. These changes could promote the structural and functional alterations in the thoracic aorta of MFS patients.

User Participation in Pilot Implementation: Porters and Nurses Coordinating Patient Transports

DEFF Research Database (Denmark)

Torkilsheyggi, Arnvør Martinsdóttir á; Hertzum, Morten

2014-01-01

Pilot implementations provide users with real-work experiences of how a system will affect their daily work before the design of the system is finalized. On the basis of a pilot implementation of a system for coordinating the transport of patients by hospital porters, we investigate pilot impleme...... the use of the pilot system because the porters and nurses learned about their needs throughout the pilot implementation, not just during use. Finally, we discuss how the scope and duration of a pilot implementation influence the conditions for participation....

Impact of Race Versus Education and Race Versus Income on Patients' Motivation to Participate in Clinical Trials.

Science.gov (United States)

Kurt, Anita; Kincaid, Hope; Semler, Lauren; Jacoby, Jeanne L; Johnson, Melanie B; Careyva, Beth A; Stello, Brian; Friel, Timothy; Smulian, John C; Knouse, Mark C

2017-12-26

Our study investigates whether levels of motivation and barriers to participation in clinical trials vary with patients' education and income. A self-administered survey asked outpatients to rank potential influential factors on a "0" to "4" significance scale for their motivation to participate in clinical trials. Principal component analysis (PCA), analysis of variance (ANOVA), Kruskal-Wallis, and Mann-Whitney U tests analyzed the impact of race, education, and income on their motivation to participate. Analysis included 1841 surveys; most respondents had a high school education or some college, and listed annual income motivation scale 1 scores (p = .0261). Compared with their counterparts, subjects with less education/lower income ranked monetary compensation (p = .0420 and p motivator. Minorities and patients with less education and lower income appear to be more influenced by their desire to please the doctor, the race and sex of the doctor, and the language spoken by the doctor being the same as theirs. For all races, education appeared to have a direct relationship with motivation to participate, except for African-Americans, whose motivation appeared to decline with more education. Income appeared to have an inverse relationship with motivation to participate for all races.

Willingness to participate in genomics research and desire for personal results among underrepresented minority patients: a structured interview study.

Science.gov (United States)

Sanderson, Saskia C; Diefenbach, Michael A; Zinberg, Randi; Horowitz, Carol R; Smirnoff, Margaret; Zweig, Micol; Streicher, Samantha; Jabs, Ethylin Wang; Richardson, Lynne D

2013-10-01

Patients from traditionally underrepresented communities need to be involved in discussions around genomics research including attitudes towards participation and receiving personal results. Structured interviews, including open-ended and closed-ended questions, were conducted with 205 patients in an inner-city hospital outpatient clinic: 48 % of participants self-identified as Black or African American, 29 % Hispanic, 10 % White; 49 % had an annual household income of personal results to be returned was not mentioned, 82 % of participants were willing to participate in genomics research. Reasons for willingness fell into four themes: altruism; benefit to family members; personal health benefit; personal curiosity and improving understanding. Reasons for being unwilling fell into five themes: negative perception of research; not personally relevant; negative feelings about procedures (e.g., blood draws); practical barriers; and fear of results. Participants were more likely to report that they would participate in genomics research if personal results were offered than if they were not offered (89 vs. 62 % respectively, p personal genomic risk results for cancer, heart disease and type 2 diabetes than obesity (89, 89, 91, 80 % respectively, all p personal results was disease-specific worry. There was considerable willingness to participate in and desire for personal results from genomics research in this sample of predominantly low-income, Hispanic and African American patients. When returning results is not practical, or even when it is, alternatively or additionally providing generic information about genomics and health may also be a valuable commodity to underrepresented minority and other populations considering participating in genomics research.

Impact of partial participation in integrated family planning training on medical knowledge, patient communication and professionalism.

Science.gov (United States)

Steinauer, Jody E; Turk, Jema K; Preskill, Felisa; Devaskar, Sangita; Freedman, Lori; Landy, Uta

2014-04-01

Obstetrics and gynecology residency programs are required to provide access to abortion training, but residents can opt out of participating for religious or moral reasons. Quantitative data suggest that most residents who opt out of doing abortions participate and gain skills in other aspects of the family planning training. However, little is known about their experience and perspective. Between June 2010 and June 2011, we conducted semistructured interviews with current and former residents who opted out of some or all of the family planning training at ob-gyn residency programs affiliated with the Kenneth J. Ryan Residency Training Program in Abortion and Family Planning. Residents were either self-identified or were identified by their Ryan Program directors as having opted out of some training. The interviews were transcribed and coded using modified grounded theory. Twenty-six physicians were interviewed by telephone. Interviewees were from geographically diverse programs (35% Midwest, 31% West, 19% South/Southeast and 15% North/Northeast). We identified four dominant themes about their experience: (a) skills valued in the family planning training, (b) improved patient-centered care, (c) changes in attitudes about abortion and (d) miscommunication as a source of negative feelings. Respondents valued the ability to partially participate in the family planning training and identified specific aspects of their training which will impact future patient care. Many of the effects described in the interviews address core competencies in medical knowledge, patient care, communication and professionalism. We recommend that programs offer a spectrum of partial participation in family planning training to all residents, including residents who choose to opt out of doing some or all abortions. Learners who morally object to abortion but participate in training in family planning and abortion, up to their level of comfort, gain clinical and professional skills. We

Patient participation in free cataract surgery: a cross-sectional study of the low-income elderly in urban China.

Science.gov (United States)

Lin, Haotian; Lin, Duoru; Long, Erping; Jiang, Haofeng; Qu, Bo; Tang, Jinzhu; Lin, Yingfen; Chen, Jingjing; Wu, Xiaohang; Lin, Zhuoling; Li, Xiaoyan; Liu, Zhenzhen; Zhang, Bo; Chen, Hui; Tan, Xuhua; Luo, Lixia; Liu, Yizhi; Chen, Weirong

2016-04-15

To explore the characteristics of the low-income elderly who underwent free cataract surgery and to determine the degree of patient satisfaction with the free cataract surgery programme in urban China. A free cataract surgery management workflow was designed as a poverty relief project in Guangzhou. In this study, participants who underwent free cataract surgery between January and August 2014 received a telephone interview based on a structured questionnaire. Data were collected on patient demographics, resources, health conditions, reasons for undergoing the free surgery and overall evaluation of the free cataract surgery programme. Among the 833 participants, the mean surgical age was 76.85±7.46 years (95% CI 76.34 to 77.36), and the male to female ratio was 385:448. The majority (94.31%, 746/791) of patients resided in the main urban districts. Patients underwent surgery 61.08±60.15 months (95% CI 56.17 to 66.00) after becoming aware of the cataract, although 66.83% of them reported that their daily lives were influenced by cataracts. Only 21.5% of the respondents underwent physical examinations that included regular eye screening, and only 6.30% were highly educated patients. Financial problems were the primary reason cited by patients for participating in the free surgery programme. Those patients with a monthly family income of 1000-2999¥ (US$161-482) per capita constituted the largest patient population. The free clinics in the parks and the free cataract surgery were highly rated (9.46 and 9.11 of 10 points) by the beneficiaries. The telephone survey revealed a high level of patient satisfaction regarding the free cataract surgery programme. Most of the patients who participated in the programme resided in major urban districts and had poor health awareness and a low level of education. The information provided by this study is crucial for improving and expanding the management of free cataract surgery programmes. NCT02633865; Post

Overcoming barriers to work participation for patients with postpoliomyelitis syndrome.

Science.gov (United States)

Ten Katen, Kim; Beelen, Anita; Nollet, Frans; Frings-Dresen, Monique H W; Sluiter, Judith K

2011-01-01

This study aimed to explore the perceived work ability of patients with postpoliomyelitis syndrome (PPS), to identify barriers and factors that are impeding or conducive, respectively, to work participation, and to identify possible interventions. Qualitative cross-sectional interview study with 17 subjects with PPS, 12 women and 5 men, mean age 49 years (SD: 11). Semi-structured interviews were held with the subjects in their homes, with the aid of a topic list. The COREQ criteria list for qualitative research was used as guideline in design and analysis. Thirteen out of 17 subjects rated their work ability six or higher on a scale from 0 to 10. Most subjects worked in an administrative, educational or managerial function. Five subjects stopped working, four worked between 0 and 20 h/week and eight worked between 20 and 40 h/week. Factors conducive to working were physical adaptations in the workplace, accessibility of the workplace and high decision latitude. Barriers to full work ability in PPS patients were high physical job demands, low social support and the symptoms of PPS, especially fatigue and pain. These findings suggest that work-oriented interventions aimed at preventing PPS patients from dropping out of the workforce should primarily focus on reducing physical job demands, arranging adaptations in the workplace and increasing job control.

Limitations in Activity and Participation experienced by stroke patients : A Qualitative Inquiry

Directory of Open Access Journals (Sweden)

A. Rhoda

2012-12-01

Full Text Available Stroke affects individuals in a number of ways. The InternationalClassification of Functioning, Disability and Health can be used to conceptualizedisability post stroke. This framework not only identifies the factors as it relatesto disability but also highlights the conceptual factors which impacts on theindividual’s ability to function. Within the framework of the ICF, the aim of thestudy was therefore to explore the activity limitations and participation restrictionsexperienced by patients with a stroke. A qualitative approach was used to interviewa convenient sample of 8 participants who were living in the community. A semistructuredinterview was conducted to obtain the data. The findings reveal that the participants had impairments of bodyfunctions of both the upper and lower limb. They experienced limitations in activities such as caring for themselves andmobility and were restricted in their ability to fulfill roles such work and caring for family. The factors which influencedthe above were personal factors such as impairments and environmental factors such as family and therapy. This studyprovides valuable qualitative information that could be used by health care professionals when providing rehabilitationservices to people with stroke aimed at reintegration back into the community.

Patient Participation in Psoriasis and Psoriatic Arthritis Outcome Research: A Report from the GRAPPA 2013 Annual Meeting

NARCIS (Netherlands)

de Wit, M.P.T.; Campbell, W.; Fitzgerald, O.; Gladman, D.D.; Helliwell, P.S.; James, J.; Lindsay, C.; MacDonald, R.; McHugh, N.J.; Mease, P.J.; Orbai, A.M.; Palominos, P.; Parkinson, A.; Tillett, W.; Goel, N.

2014-01-01

For the first time, 8 patients with psoriatic arthritis (PsA) participated as full delegates at the 2013 Annual Meeting of the Group for Research and Assessment of Psoriasis and Psoriatic Arthritis (GRAPPA). Patients were invited to provide their perspective for different sessions of the conference

Patients' and their family members' experiences of participation in care following an acute exacerbation in chronic obstructive pulmonary disease: A phenomenological-hermeneutic study.

Science.gov (United States)

Andersen, Ingrid Charlotte; Thomsen, Thora Grothe; Bruun, Poul; Bødtger, Uffe; Hounsgaard, Lise

2017-12-01

To explore the experiences of patients with chronic obstructive pulmonary disease and their family members relating both to participation in care during hospitalisation for an acute exacerbation in chronic obstructive pulmonary disease, and to the subsequent day-to-day care at home. When recovering from an exacerbation, the challenges associated with an unpredictable health condition dominate everyday life for patients and can involve their family members. Proper patient and family participation in care during discharge and follow-up can help patients to improve self-management. However, knowledge of the significance of patient and family participation for recovery and subsequent everyday life is still limited. This study adopted a longitudinal design informed by ethnographic fieldwork principles. Participant observations and interviews with 15 patients and 12 family members were conducted on a Danish hospital ward and twice at the participants' homes. A phenomenological-hermeneutic approach inspired by Ricoeur's theory of interpretation guided the data analysis. Participation in care was perceived as valuable, but could be associated with tensions and increased uncertainty. While patients mostly demonstrated a reactive approach to care, family members strived to be more proactive. In hospital, preparing for discharge included an effort to find a balance between powerlessness and influence during interactions with healthcare professionals. At home, managing further recovery and self-management were characterised by navigating between mutual pressure and consideration within the family. Family members play an important role in ensuring that patients are seen, heard and understood, but want to be acknowledged more by healthcare professionals. Appropriate interactions with healthcare professionals are crucial in order to support discharge and daily self-management. Knowledge of the challenges that patients with chronic obstructive pulmonary disease and their family

Implementation of resources to support patient physical activity through diabetes centres in Nova Scotia: the effectiveness of enhanced support for exercise participation.

Science.gov (United States)

Fowles, Jonathon R; Shields, Chris; d'Entremont, Lisette; McQuaid, Stephanie; Barron, Brittany; Dunbar, Peggy

2014-12-01

The purpose of this study was to determine the effectiveness of enhancing support for physical activity counselling and exercise participation at diabetes centres in Nova Scotia on physical activity and exercise behaviours and clinical outcomes in patients with type 2 diabetes mellitus. In all, 180 patients at 8 diabetes centres participated in this observational study. A range of enhanced supports for exercise were offered at these centres. A kinesiologist was added to the diabetes care team to primarily provide extra physical activity counselling and exercise classes. Patient physical activity and exercise levels, efficacy perceptions and mean glycated hemoglobin (A1C) were evaluated at baseline and 6 months. We compared changes in these variables for patients who participated in the enhanced supports versus patients who did not. Participants who attended exercise classes (n=46), increased moderate physical activity by 27% and doubled resistance exercise participation (1.0±1.8 to 2.0±2.1 days per week) whereas those who did not attend exercise classes (n=49) reduced moderate physical activity by 26% and did not change resistance exercise participation (interactions, p=0.04 and p=0.07, respectively). Patients who received resistance band instruction (n=15) from a kinesiologist had reductions in A1C (from 7.5±1.4 to 7.1±1.2; p=0.04), whereas other subgroups did not have significant changes in A1C. Offering enhanced support for exercise at diabetes centres produced improvements in physical activity and exercise in type 2 diabetes patients. Resistance band instruction from a kinesiologist combined with participating in a walking and resistance training program improved glycemic control, which underscores the importance of including exercise professionals in diabetes management. Copyright © 2014 Canadian Diabetes Association. Published by Elsevier Inc. All rights reserved.

Neuropsychology of colour vision: Studies in patients with acquired brain damage, healthy participants, and cases

NARCIS (Netherlands)

Nijboer, T.C.W.

2007-01-01

In this thesis, we studied the neuropsychology of low-level sensory and higher-order visual perception in healthy participants, patients with acquired deficits in visual perception, and a man with a selective developmental deficit in colour processing. In neuropsychological literature, sensory

TOTAL HIP OR KNEE REPLACEMENT SURGERY: ACCOMPANYING RELATIVES´ ROLE IN SUPPORTING PATIENTS TO COMPLY WITH THE NEED FOR ACTIVE PARTICIPATION IN ACCELERATED INTERVENTION PROGRAMS

DEFF Research Database (Denmark)

Stampe, Mette Adler

2012-01-01

it reduces anxiety and increases patient motivation. Policies and clinical guidelines focus on active participation of both patients and relatives in order to increase the quality of healthcare. In light of increasing demands of patients and relatives´ active participation research is needed about...... at a patient hotel. A qualitative approach was applied to explore the patients´ experiences. Edmund Husserl´s philosophy of phenomenology was used as inspiration for the research approach applied. Five participants attended a semi-structured interview and a follow-up interview, each. The analysis was conducted...

[Social participation after childhood craniopharyngioma].

Science.gov (United States)

Olivari-Philiponnet, C; Roumenoff, F; Schneider, M; Chantran, C; Picot, M; Berlier, P; Mottolese, C; Bernard, J-C; Vuillerot, C

2016-12-01

Craniopharyngioma is a rare, benign central nervous system tumor, which may be a source of multiple complications, from endocrinology to vision, neurology and neurocognitive functions. This morbidity can lead to reduced participation in life activities, as described in the International Classification of Functioning, Disability, and Health. The primary objective of this study was to measure participation in life activities in a population of children and young adults affected by childhood craniopharyngioma, using the LIFE-H questionnaire (Assessment of Life Habits), validated as a social participation measurement tool in various pediatric disabilities. We also describe complications in our population and examined the potential links between tumor characteristics, complications, and participation in life activities. This was a descriptive study, including all patients having presented childhood craniopharyngioma (before 18 years of age), followed in the Lyon region between 2007 and 2013. The main criterion was the LIFE-H results, completed by the patient or the carer. Of 21 patients included in the study, 14 completed the questionnaire, a mean 6.7 years after the diagnosis (SD: 3.9 years). The mean total LIFE-H score was 8.4 (SD: 1.03) for a normal score estimated at 10 in the general population. The lowest scores affected the nutrition, community life, and recreation dimensions. No patient had a normal score on all dimensions; 57% of the patients had more than three dimensions affected. The variability of the results between patients was lower for some dimensions with high means (fitness, personal care, communication, housing, mobility, responsibilities, and education) than in others (nutrition, interpersonal relationships, community life, employment, and recreation) with rather low means. All patients had an endocrinological deficit, 19% hypothalamic syndrome, 52% an impaired fulfillment feeling, 76% visual impairment, 14% neurologic impairment, and 91

Barriers and facilitators for clinical trial participation among diverse Asian patients with breast cancer: a qualitative study.

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Lee, Guek Eng; Ow, Mandy; Lie, Desiree; Dent, Rebecca

2016-07-22

Recruitment rates for cancer trials are low for racial/ethnic minorities. Little is known about factors influencing trial recruitment in Asian patients. Our aim is to examine the barriers and facilitators for participation in trials among multi-ethnic Asian women with breast cancer. We recruited a convenience sample from consecutive women seen at the National Cancer Centre. Two experienced bilingual (English and Chinese) moderators conducted focus groups to theme saturation. The question guide incorporated open-ended questions soliciting opinions about trial participation and knowledge. Women were first asked if they were willing, unwilling, or still open to participate in future trials. Sessions were audiotaped and transcribed. Transcripts were independently coded for emergent themes. Sixteen of 103 women approached participated in five focus groups. Chinese, Malay, and Indian participants aged 29 to 69 represented different cancer stages. Five had no prior knowledge of trials. We identified three major themes comprising of 22 minor themes for barriers and facilitators. The major themes were: 1) patient-related, 2) trial-related, and 3) sociocultural factors. Women willing to join trials expressed themes representing facilitators (better test therapy, cost-effective profile, or trust in doctors and local healthcare systems). Women unwilling to participate expressed themes associated with barriers, while women still open to participation expressed themes representing both facilitators and barriers. Malay women were more likely to express themes related to 'fatalism' as a barrier. We found that facilitators and barriers to trial participation among Asian women were similar to those previously reported in Western women. Knowledge of trials is limited among women receiving breast cancer treatment. Unique sociocultural factors suggest that approaches customised to local and community beliefs are needed to improve trial participation in minority groups.

Specialist nurses’ perceptions of inviting patients to participate in clinical research studies: a qualitative descriptive study of barriers and facilitators

Directory of Open Access Journals (Sweden)

Caroline French

2016-08-01

Full Text Available Abstract Background Increasing the number of patients participating in research studies is a current priority in the National Health Service (NHS in the United Kingdom. The role of specialist nurses in inviting patients to participate is important, yet little is known about their experiences of doing so. The aim of this study was to explore the perceptions of barriers and facilitators held by specialist nurses with experience of inviting adult NHS patients to a wide variety of research studies. Methods A cross-sectional qualitative descriptive study was conducted between March and July 2015. Participants were 12 specialist nurses representing 7 different clinical specialties and 7 different NHS Trusts. We collected data using individual semi-structured interviews, and analysed transcripts using the Framework method to inductively gain a descriptive overview of barriers and facilitators. Results Barriers and facilitators were complex and interdependent. Perceptions varied among individuals, however barriers and facilitators centred on five main themes: i assessing patient suitability, ii teamwork, iii valuing research, iv the invitation process and v understanding the study. Facilitators to inviting patients to participate in research often stemmed from specialist nurses’ attitudes, skills and experience. Positive research cultures, effective teamwork and strong relationships between research and clinical teams at the local clinical team level were similarly important. Barriers were reported when specialist nurses felt they were providing patients with insufficient information during the invitation process, and when specialist nurses felt they did not understand studies to their satisfaction. Conclusion Our study offers several new insights regarding the role of specialist nurses in recruiting patients for research. It shows that strong local research culture and teamwork overcome some wider organisational and workload barriers reported in

Specialist nurses' perceptions of inviting patients to participate in clinical research studies: a qualitative descriptive study of barriers and facilitators.

Science.gov (United States)

French, Caroline; Stavropoulou, Charitini

2016-08-11

Increasing the number of patients participating in research studies is a current priority in the National Health Service (NHS) in the United Kingdom. The role of specialist nurses in inviting patients to participate is important, yet little is known about their experiences of doing so. The aim of this study was to explore the perceptions of barriers and facilitators held by specialist nurses with experience of inviting adult NHS patients to a wide variety of research studies. A cross-sectional qualitative descriptive study was conducted between March and July 2015. Participants were 12 specialist nurses representing 7 different clinical specialties and 7 different NHS Trusts. We collected data using individual semi-structured interviews, and analysed transcripts using the Framework method to inductively gain a descriptive overview of barriers and facilitators. Barriers and facilitators were complex and interdependent. Perceptions varied among individuals, however barriers and facilitators centred on five main themes: i) assessing patient suitability, ii) teamwork, iii) valuing research, iv) the invitation process and v) understanding the study. Facilitators to inviting patients to participate in research often stemmed from specialist nurses' attitudes, skills and experience. Positive research cultures, effective teamwork and strong relationships between research and clinical teams at the local clinical team level were similarly important. Barriers were reported when specialist nurses felt they were providing patients with insufficient information during the invitation process, and when specialist nurses felt they did not understand studies to their satisfaction. Our study offers several new insights regarding the role of specialist nurses in recruiting patients for research. It shows that strong local research culture and teamwork overcome some wider organisational and workload barriers reported in previous studies. In addition, and in contrast to common practice

On the utility of within-participant research design when working with patients with neurocognitive disorders.

Science.gov (United States)

Steingrimsdottir, Hanna Steinunn; Arntzen, Erik

2015-01-01

Within-participant research designs are frequently used within the field of behavior analysis to document changes in behavior before, during, and after treatment. The purpose of the present article is to show the utility of within-participant research designs when working with older adults with neurocognitive disorders. The reason for advocating for these types of experimental designs is that they provide valid information about whether the changes that are observed in the dependent variable are caused by manipulations of the independent variable, or whether the change may be due to other variables. We provide examples from published papers where within-participant research design has been used with patients with neurocognitive disorders. The examples vary somewhat, demonstrating possible applications. It is our suggestion that the within-participant research design may be used more often with the targeted client group than is documented in the literature at the current date.

The body participating:

DEFF Research Database (Denmark)

Pallesen, Hanne; Lund, Lone Blak; Jensen, Marianne

2017-01-01

-based analyses. The results were theoretically stated and supported. Results: In an effort to achieve patient participation, the following four themes seemed to be significant: 1) consciously encountering the patient in the moment, 2) the employment of concepts surrounding the interaction between body...

Does Media Use Result in More Active Communicators? Differences Between Native Dutch and Turkish-Dutch Patients in Information-Seeking Behavior and Participation During Consultations With General Practitioners.

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Schinkel, Sanne; Van Weert, Julia C M; Kester, Jorrit A M; Smit, Edith G; Schouten, Barbara C

2015-08-01

This study investigates differences between native Dutch and Turkish-Dutch patients with respect to media usage before and patient participation during medical consultations with general practitioners. In addition, the authors assessed the relation between patient participation and communication outcomes. The patients were recruited in the waiting rooms of general practitioners, and 191 patients (117 native Dutch, 74 Turkish-Dutch) completed pre- and postconsultation questionnaires. Of this sample, 120 patients (62.8%; 82 native Dutch, 38 Turkish-Dutch) agreed to have their consultations recorded to measure patient participation. Compared with Turkish-Dutch patients of similar educational levels, results showed that native Dutch patients used different media to search for information, participated to a greater extent during their consultations and were more responsive to their general practitioner. With respect to the Turkish-Dutch patients, media usage was related to increased patient participation, which was correlated with having fewer unfulfilled information needs; however, these relations were not found in the native Dutch patient sample. In conclusion, interventions that enhance participation among ethnic minority patients will better fulfill informational needs when such interventions stimulate information-seeking behavior in that group before a medical consultation.

The MS@Work study: a 3-year prospective observational study on factors involved with work participation in patients with relapsing-remitting Multiple Sclerosis.

Science.gov (United States)

van der Hiele, Karin; van Gorp, Dennis A M; Heerings, Marco A P; van Lieshout, Irma; Jongen, Peter J; Reneman, Michiel F; van der Klink, Jac J L; Vosman, Frans; Middelkoop, Huub A M; Visser, Leo H

2015-08-12

Multiple Sclerosis (MS) is the most common cause of neurological disability in young and middle-aged adults. At this stage in life most people are in the midst of their working career. The majority of MS patients are unable to retain employment within 10 years from disease onset. Leading up to unemployment, many may experience a reduction in hours or work responsibilities and increased time missed from work. The MS@Work study examines various factors that may influence work participation in relapsing-remitting MS patients, including disease-related factors, the working environment and personal factors. The MS@Work study is a multicenter, 3-year prospective observational study on work participation in patients with relapsing-remitting MS. We aim to include 350 patients through 15-18 MS outpatient clinics in the Netherlands. Eligible participants are 18 years and older, and either currently employed or within three years since their last employment. At baseline and after 1, 2 and 3 years, the participants are asked to complete online questionnaires (including questions on work participation, work problems and accommodations, cognitive and physical ability, anxiety, depression, psychosocial stress, quality of life, fatigue, empathy, personality traits and coping strategies) and undergo cognitive and neurological examinations. After six months, patients are requested to only complete online questionnaires. Patient perspectives on maintaining and improving work participation and reasons to stop working are gathered through semi-structured interviews in a sub-group of patients. Prospective studies with long-term follow-up on work participation in MS are rare, or take into account a limited number of factors. The MS@Work study provides a 3-year follow-up on various factors that may influence work participation in patients with relapsing-remitting MS. We aim to identify factors that relate to job loss and to provide information about preventative measures for physicians

Do Alzheimer's Disease Patients Want to Participate in a Treatment Decision, and Would Their Caregivers Let Them?

Science.gov (United States)

Hirschman, Karen B.; Joyce, Colette M.; James, Bryan D.; Xie, Sharon X.; Karlawish, Jason H.T.

2005-01-01

Purpose: This study was designed to examine the factors associated with the preferences of Alzheimer's disease patients to participate in a decision to use an Alzheimer's disease-slowing medication and how involved their caregivers would let them be in this decision. Design and Methods: Interviews were conducted with 48 patients in the…

Scale-free functional connectivity of the brain is maintained in anesthetized healthy participants but not in patients with unresponsive wakefulness syndrome.

Directory of Open Access Journals (Sweden)

Xiaolin Liu

Full Text Available Loss of consciousness in anesthetized healthy participants and in patients with unresponsive wakefulness syndrome (UWS is associated with substantial alterations of functional connectivity across large-scale brain networks. Yet, a prominent distinction between the two cases is that after anesthesia, brain connectivity and consciousness are spontaneously restored, whereas in patients with UWS this restoration fails to occur, but why? A possible explanation is that the self-organizing capability of the brain is compromised in patients with UWS but not in healthy participants undergoing anesthesia. According to the theory of self-organized criticality, many natural complex systems, including the brain, evolve spontaneously to a critical state wherein system behaviors display spatial and/or temporal scale-invariant characteristics. Here we tested the hypothesis that the scale-free property of brain network organization is in fact fundamentally different between anesthetized healthy participants and UWS patients. We introduced a novel, computationally efficient approach to determine anatomical-functional parcellation of the whole-brain network at increasingly finer spatial scales. We found that in healthy participants, scale-free distributions of node size and node degree were present across wakefulness, propofol sedation, and recovery, despite significant propofol-induced functional connectivity changes. In patients with UWS, the scale-free distribution of node degree was absent, reflecting a fundamental difference between the two groups in adaptive reconfiguration of functional interaction between network components. The maintenance of scale-invariance across propofol sedation in healthy participants suggests the presence of persistent, on-going self-organizing processes to a critical state--a capacity that is compromised in patients with UWS.

Factors affecting patient participation in orthopaedic trials comparing surgery to non-surgical interventions

Directory of Open Access Journals (Sweden)

Rajat Mittal

2016-08-01

Conclusion: Patient non-participation in an RCT comparing surgery to no surgery is related to concern about receiving a treatment through chance and the presence of a strong preference for a particular treatment, particularly a non-surgical one. To avoid protracted recruitment periods, investigators can increase the number of study sites and ensure personnel involved have equipoise and are trained to provide a balanced view of both treatment arms.

Organized sports participation and the association with injury in paediatric patients with haemophilia.

Science.gov (United States)

McGee, S; Raffini, L; Witmer, C

2015-07-01

With the wide availability of factor and the routine use of prophylaxis boys with haemophilia are now able to participate in regular physical activity, including organized sports. Current guidelines vary regarding specific recommendations for sports participation and concerns remain regarding safety. To determine if participation in organized sports is associated with an increased risk for injury in paediatric subjects with haemophilia. Retrospective single-centre cohort study from January 1, 2008 to December 31, 2010 in male subjects ages 10-18 years with a factor VIII (FVIII) or FIX level sports was recorded. 48 male subjects with a mean age of 14.3 ± 2.6 years (range: 10-18.8) were included; 64.6% (31/48) FVIII deficiency, 54.2% (26/48) severe haemophilia, 18.8% (9/48) moderate and 27.1% (13/48) mild. The majority [62.5% (30/48)] of subjects participated in at least one season of organized sport. There were 77 injuries in 36/48 (75%) subjects. The mean number of injuries per subject was 1.6 ± 1.5. There was no statistical difference in the mean number of injuries (P = 0.44) or target joint formation (P = 0.52) between the subjects who participated in organized sports compared to those who did not. In this study, participation in organized sports by boys with haemophilia, ages 10-18 years, is common and not associated with an increased number of injuries or the development of a target joint. As injuries occurred equally in both groups, concerted efforts should be directed at reducing injuries in all patients. © 2015 John Wiley & Sons Ltd.

Promoting patient participation in healthcare interactions through communication skills training: A systematic review.

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D'Agostino, Thomas A; Atkinson, Thomas M; Latella, Lauren E; Rogers, Madeline; Morrissey, Dana; DeRosa, Antonio P; Parker, Patricia A

2017-07-01

To present literature on training patients in the use of effective communication skills. Systematic searches were conducted in six databases. References were screened for inclusion through several phases. Extracted data included intervention study design, sample characteristics, content and structure of training programs, outcomes assessed, and findings reported. A total of 32 unique intervention studies were included. Most targeted primary care or cancer patients and used a randomized controlled study design. Interventions used a variety of training formats and modes of delivering educational material. Reported findings suggest that communication training is an effective approach to increase patients' total level of active participation in healthcare interactions and that some communication behaviors may be more amenable to training (e.g., expressing concerns). Trained patients do not have longer visits and tend to receive more information from their providers. Most studies have found no relationship between communication training and improved health, psychosocial wellbeing, or treatment-related outcomes. Findings reinforce the importance and potential benefits of patient communication training. Additional research is warranted to determine the most efficacious training programs with the strongest potential for dissemination. Copyright © 2017 Elsevier B.V. All rights reserved.

Work participation of patients with musculoskeletal disorders: is this addressed in physical therapy practice?

Science.gov (United States)

Oswald, Wiebke; Hutting, Nathan; Engels, Josephine A; Bart Staal, J; Nijhuis-van der Sanden, Maria W G; Heerkens, Yvonne F

2017-01-01

Musculoskeletal disorders are the main complaints for visiting a physical therapist (PT) in primary health care; they have a negative effect on an individual's quality of life and result in a major cost to society. Qualitative research has shown that physical therapists (PTs) treating patients with these disorders experience barriers in the integration of occupational factors within their practice, and also revealed a lack of cooperation between PTs and (other) occupational healthcare providers. The aim of this study is to quantitatively investigate how generalist PTs in the Netherlands, who treat patients with musculoskeletal disorders, currently integrate occupational factors within their practice, and to identify their opinions and needs with regard to enhancing the integration of the patient's work within physical therapy practice. A cross-sectional survey was conducted among generalist PTs who treat working-age (18-67 years) patients with musculoskeletal disorders. Generalist PTs were contacted for participation via digital news-mails and asked to fill out an online survey which was developed based on the results of a recent qualitative study. The survey consisted of: i) demographics of the participants, ii) questions on how generalist PTs currently integrate occupational factors within their practice, and iii) asked their opinion about the integration of occupational factors within physical therapy. The PTs were also asked about their needs with regard to the integration of occupational factors and with regard to cooperation with other (occupational) health professionals. All answers (using Likert scales) are presented as the number and percentage of the respondents reporting those specific answers, whereas all other answers are presented as means and standard deviations. Of the 142 respondents, 64% indicated that occupational factors should be addressed to a greater extent within physical therapy. To have the possibility to bill for a workplace assessment

Non-participants and reasons for non-participation in a pragmatic trial of energy healing as cancer rehabilitation

DEFF Research Database (Denmark)

Techau, Marzcia Elisa Camille; Lunde, Anita; Pedersen, Christina Gundgaard

2014-01-01

Introduction: The problems associated with clinical trial participation have been highlighted in the literature, but few studies have examined why patients decline to participate. Aims: To describe non-participants' and participants' characteristics and examine reasons for non-participation in a ......Introduction: The problems associated with clinical trial participation have been highlighted in the literature, but few studies have examined why patients decline to participate. Aims: To describe non-participants' and participants' characteristics and examine reasons for non......-participation in a pragmatic trial of energy healing for rehabilitation for colorectal cancer. Methods: Three to seven days after postal recruitment, all eligible participants (n=783) were contacted by telephone. Reasons given for non-participation were recorded in 5 categories. Data were analyzed using Chi2. Results: More.......001). The most frequent reasons for non-participation were (1) No need for rehabilitation (n=81; 28.6%), (2) participation too burdensome (n=67; 23.7%), and (3) no interest in energy healing (n=57; 20.1%). If the time span between study recruitment and surgery was 0-9 months, participation was frequently...

Transparency and public accessibility of clinical trial information in Croatia: how it affects patient participation in clinical trials.

Science.gov (United States)

Šolić, Ivana; Stipčić, Ana; Pavličević, Ivančica; Marušić, Ana

2017-06-15

Despite increased visibility of clinical trials through international trial registries, patients often remain uninformed of their existence, especially if they do not have access to adequate information about clinical research, including the language of the information. The aim of this study was to describe the context for transparency of clinical trials in Croatia in relation to countries in Central and Eastern Europe, and to assess how informed Croatian patients are about clinical trials and their accessibility. We assessed the transparency of clinical trials from the data available in the public domain. We also conducted an anonymous survey on a convenience sample of 257 patients visiting two family medicine offices or an oncology department in south Croatia, and members of national patients' associations. Despite legal provisions for transparency of clinical trials in Croatia, they are still not sufficiently visible in the public domain. Among countries from Central and Eastern Europe, Croatia has the fewest number of registered trials in the EU Clinical Trials Registry. 66% of the patients in the survey were aware of the existence of clinical trials but only 15% were informed about possibilities of participating in a trial. Although 58% of the respondents were willing to try new treatments, only 6% actually participated in a clinical trial. Only 2% of the respondents were aware of publicly available trial registries. Our study demonstrates that there is low transparency of clinical trials in Croatia, and that Croatian patients are not fully aware of clinical trials and the possibilities of participating in them, despite reported availability of Internet resources and good communication with their physicians. There is a need for active policy measures to increase the awareness of and access to clinical trials to patients in Croatia, particularly in their own language.

Are performance-based measures predictive of work participation in patients with musculoskeletal disorders? A systematic review

NARCIS (Netherlands)

Kuijer, P. P. F. M.; Gouttebarge, V.; Brouwer, S.; Reneman, M. F.; Frings-Dresen, M. H. W.

Assessments of whether patients with musculoskeletal disorders (MSDs) can participate in work mainly consist of case history, physical examinations, and self-reports. Performance-based measures might add value in these assessments. This study answers the question: how well do performance-based

The functional magnetic resonance imaging (fMRI) procedure as experienced by healthy participants and stroke patients – A pilot study

International Nuclear Information System (INIS)

Szameitat, André J; Shen, Shan; Sterr, Annette

2009-01-01

An important aspect in functional imaging research employing magnetic resonance imaging (MRI) is how participants perceive the MRI scanning itself. For instance, the knowledge of how (un)comfortable MRI scanning is perceived may help institutional review boards (IRBs) or ethics committees to decide on the approval of a study, or researchers to design their experiments. We provide empirical data from our lab gained from 70 neurologically healthy mainly student subjects and from 22 mainly elderly patients suffering from motor deficits after brain damage. All participants took part in various basic research fMRI studies using a 3T MRI scanner. Directly after the scanning, all participants completed a questionnaire assessing their experience with the fMRI procedure. 87.2% of the healthy subjects and 77.3% of the patients rated the MRI procedure as acceptable to comfortable. In healthy subjects, males found the procedure more comfortable, while the opposite was true for patients. 12.1% of healthy subjects considered scanning durations between 30 and 60 min as too long, while no patient considered their 30 min scanning interval as too long. 93.4% of the healthy subjects would like to participate in an fMRI study again, with a significantly lower rate for the subjects who considered the scanning as too long. Further factors, such as inclusion of a diffusion tensor imaging (DTI) scan, age, and study duration had no effect on the questionnaire responses. Of the few negative comments, the main issues were noise, the restriction to keep still for the whole time, and occasional feelings of dizziness. MRI scanning in the basic research setting is an acceptable procedure for elderly and patient participants as well as young healthy subjects

Interdisciplinary facilitation of the minimal participation of patients with severe brain injury in early rehabilitation

DEFF Research Database (Denmark)

Pallesen, Hanne; Buhl, Inge

2016-01-01

ABSTRACT Aim: The purpose of the study was to shed light on the participatory aspect of early rehabilitation, when contact, communication and interaction between the patients and the professionals is minimal, because of the patients’ severe brain injury and complex conditions. Methodology...... of hospital charts and memos. The data were analyzed using a four-step phenomenological analysis and NVivo 10. Major findings: Participation comes into play in various practices around the patient. Three main themes seem to be important: (1) The dynamic interplay of the multidisciplinary team as an element...

Prospective memory rehabilitation using smartphones in patients with TBI: What do participants report?

Science.gov (United States)

Evald, Lars

2015-01-01

Use of assistive devices has been shown to be beneficial as a compensatory memory strategy among brain injury survivors, but little is known about possible advantages and disadvantages of the technology. As part of an intervention study participants were interviewed about their experiences with the use of low-cost, off-the-shelf, unmodified smartphones combined with Internet calendars as a compensatory memory strategy. Thirteen community-dwelling patients with traumatic brain injury (TBI) received a 6-week group-based instruction in the systematic use of a smartphone as a memory compensatory aid followed by a brief structured open-ended interview regarding satisfaction with and advantages and disadvantages of the compensatory strategy. Ten of 13 participants continued to use a smartphone as their primary compensatory strategy. Audible and visual reminders were the most frequently mentioned advantages of the smartphone, and, second, the capability as an all-in-one memory device. In contrast, battery life was the most often mentioned disadvantage, followed by concerns about loss or failure of the device. Use of a smartphone seems to be a satisfactory compensatory memory strategy to many patients with TBI and smartphones come with features that are advantageous to other compensatory strategies. However, some benefits come hand-in-hand with drawbacks, such as the feeling of dependency. These aspects should be taken into account when choosing assistive technology as a memory compensatory strategy.

Readiness to participate in advance care planning: A qualitative study of renal failure patients, families and healthcare providers.

Science.gov (United States)

Hutchison, Lauren A; Raffin-Bouchal, Donna S; Syme, Charlotte A; Biondo, Patricia D; Simon, Jessica E

2017-09-01

Objectives Advance care planning is the process by which people reflect upon their wishes and values for healthcare, discuss their choices with family and friends and document their wishes. Readiness represents a key predictor of advance care planning participation; however, the evidence for addressing readiness is scarce within the renal failure context. Our objectives were to assess readiness for advance care planning and barriers and facilitators to advance care planning uptake in a renal context. Methods Twenty-five participants (nine patients, nine clinicians and seven family members) were recruited from the Southern Alberta Renal Program. Semi-structured interviews were recorded, transcribed and then analyzed using interpretive description. Results Readiness for advance care planning was driven by individual values perceived by a collaborative encounter between clinicians and patients/families. If advance care planning is not valued, then patients/families and clinicians are not ready to initiate the process. Patients and clinicians are delaying conversations until "illness burden necessitates," so there is little "advance" care planning, only care planning in-the-moment closer to the end of life. Discussion The value of advance care planning in collaboration with clinicians, patients and their surrogates needs reframing as an ongoing process early in the patient's illness trajectory, distinguished from end-of-life decision making.

Barriers and enablers to physical activity participation in patients with COPD: a systematic review.

Science.gov (United States)

Thorpe, Olivia; Johnston, Kylie; Kumar, Saravana

2012-01-01

Physical activity (PA) has been shown to improve symptoms in people with chronic obstructive pulmonary disease (COPD). Despite the high health and financial costs, the uptake of management strategies, particularly participation in PA and pulmonary rehabilitation (PR), are low. The review objective here was to identify potential barriers and enablers, which people with COPD report being associated with their participation in PA programs, including PR. A systematic search was undertaken to identify studies (published Jan 2000 to Aug 2011) reporting any barriers and enablers experienced by people with COPD regarding participation in PA and PR. Methodological quality of the studies was appraised using McMaster critical appraisal tools. A narrative summary of findings was undertaken reporting on individual study characteristics, country of origin, participants, and potential barriers and enablers. Eleven studies (8 qualitative and 3 quantitative) met the inclusion criteria for this systematic review. Several methodological issues (small sampling, poor description of data collection and analysis, issues with generalizability of the research findings) were common among included studies. Barriers identified included changing health status, personal issues, lack of support, external factors, ongoing smoking, and program-specific barriers. Enablers identified included social support, professional support, personal drivers, personal benefit, control of condition, specific goals, and program-specific enablers. The findings from this review may assist health professionals, patients, care givers and the wider community to develop effective strategies to promote participation in PA and PR among people with COPD.

Standard Versus Simplified Consent Materials for Biobank Participation: Differences in Patient Knowledge and Trial Accrual.

Science.gov (United States)

Garrett, Sarah B; Murphy, Marie; Wiley, James; Dohan, Daniel

2017-12-01

Replacing standard consent materials with simplified materials is a promising intervention to improve patient comprehension, but there is little evidence on its real-world implementation. We employed a sequential two-arm design to compare the effect of standard versus simplified consent materials on potential donors' understanding of biobank processes and their accrual to an active biobanking program. Participants were female patients of a California breast health clinic. Subjects from the simplified arm answered more items correctly ( p = .064), reported "don't know" for fewer items ( p = .077), and consented to donate to the biobank at higher rates ( p = .025) than those from the standard arm. Replacing an extant consent form with a simplified version is feasible and may benefit patient comprehension and study accrual.

Pre-dialysis patients' perceived autonomy, self-esteem and labor participation: associations with illness perceptions and treatment perceptions. A cross-sectional study.

Science.gov (United States)

Jansen, Daphne L; Grootendorst, Diana C; Rijken, Mieke; Heijmans, Monique; Kaptein, Ad A; Boeschoten, Elisabeth W; Dekker, Friedo W

2010-12-08

Compared to healthy people, patients with chronic kidney disease (CKD) participate less in paid jobs and social activities. The aim of the study was to examine a) the perceived autonomy, self-esteem and labor participation of patients in the pre-dialysis phase, b) pre-dialysis patients' illness perceptions and treatment perceptions, and c) the association of these perceptions with autonomy, self-esteem and labor participation. Patients (N = 109) completed questionnaires at home. Data were analysed using bivariate and multivariate analyses. The results showed that the average autonomy levels were not very high, but the average level of self-esteem was rather high, and that drop out of the labor market already occurs during the pre-dialysis phase. Positive illness and treatment beliefs were associated with higher autonomy and self-esteem levels, but not with employment. Multiple regression analyses revealed that illness and treatment perceptions explained a substantial amount of variance in autonomy (17%) and self-esteem (26%). The perception of less treatment disruption was an important predictor. Patient education on possibilities to combine CKD and its treatment with activities, including paid work, might stimulate positive (realistic) beliefs and prevent or challenge negative beliefs. Interventions focusing on these aspects may assist patients to adjust to CKD, and ultimately prevent unnecessary drop out of the labor market.

Social participation after successful kidney transplantation.

Science.gov (United States)

van der Mei, Sijrike F; van Sonderen, Eric L P; van Son, Willem J; de Jong, Paul E; Groothoff, Johan W; van den Heuvel, Wim J A

2007-03-30

To explore and describe the degree of social participation after kidney transplantation and to examine associated factors. A cross-sectional study on 239 adult patients 1-7.3 years after kidney transplantation was performed via in-home interviews on participation in obligatory activities (i.e., employment, education, household tasks) and leisure activities (volunteer work, assisting others, recreation, sports, clubs/associations, socializing, going out). Kidney transplantation patients had a lower educational level, spent less time on obligatory activities, had part-time jobs more often, and participated less in sports compared to a control group from the general population. No difference was found in socializing, church attendance, volunteer work and going out. Multivariate regression analysis showed a negative association of age and a positive association of educational status and time since transplantation with obligatory participation. Multivariate logistic regression showed positive associations of education and time since transplantation with volunteer work; age was negatively and education positively associated with sports and going out, whereas living arrangement was also associated with going out. Although kidney transplantation patients participate less in employment and sports, they do participate in household tasks, volunteer work, going out, socializing and other leisure activities. Participation is associated with factors as age, educational status and time since transplantation.

Barriers to healthy-lifestyle participation in stroke: consumer participation in secondary prevention design.

Science.gov (United States)

Lennon, Olive C; Doody, Catherine; Ni Choisdealbh, Cliodhna; Blake, Catherine

2013-12-01

The aim of the study was to explore community-dwelling stroke patients' perceived barriers to healthy-lifestyle participation for secondary disease prevention, as well as their preferred means for risk-reduction information dissemination and motivators to participation in healthy-lifestyle interventions. Four focus groups (5-6 stroke survivors per group) were defined from community support groups. Key questions addressed barriers to healthy-lifestyle adoption, preferred methods for receiving information and factors that would engage participants in a risk-reduction programme. Groups were audiotaped, transcribed verbatim and analysed for thematic content using a framework approach. Twenty-two participants, 12 men, 10 women, mean age 71.4 (53-87) years, were included in the study. Three overarching themes emerged as barriers to healthy-lifestyle participation: physical, mental and environmental. Exercise participation difficulties spread across all three themes; healthy eating and smoking cessation concentrated in environmental and mental dimensions. Talks (discussions) were noted as participants' preferred method of information provision. Risk-reduction programmes considered attractive were stroke specific, convenient and delivered by healthcare professionals and involved both social and exercise components. Many stroke patients appear unable to adopt healthy-lifestyle changes through advice alone because of physical, mental and environmental barriers. Risk-reduction programmes including interactive education should be specifically tailored to address barriers currently experienced and extend beyond the stroke survivor to others in their environment who influence lifestyle choices.

Migrant breast cancer patients and their participation in genetic counseling : results from a registry-based study

NARCIS (Netherlands)

Baars, J E; van Dulmen, A M; Velthuizen, M E; Theunissen, E B M; Vrouenraets, B C; Kimmings, A N; van Dalen, T; van Ooijen, B; Witkamp, A J; van der Aa, M A; Ausems, M G E M

Certain ethnic groups seem to have less access to cancer genetic counseling. Our study was to investigate the participation in cancer genetic counseling among migrant breast cancer patients of Turkish and Moroccan origin. Hospital medical records of Turkish and Moroccan and of a comparative group of

Migrant breast cancer patients and their participation in genetic counseling: results from a registry-based study.

NARCIS (Netherlands)

Baars, J.E.; Dulmen, A.M. van; Velthuizen, M.E.; Theunissen, E.B.M.; Vrouenraets, B.C.; Kimmings, A.N.; Dalen, T. van; Ooijen, B. van; Witkamp, A.J.; Aa, M.A. van der; Ausems, M.G.E.M.

2016-01-01

Certain ethnic groups seem to have less access to cancer genetic counseling. Our study was to investigate the participation in cancer genetic counseling among migrant breast cancer patients of Turkish and Moroccan origin. Hospital medical records of Turkish and Moroccan and of a comparative group of

Migrant breast cancer patients and their participation in genetic counseling: results from a registry-based study

NARCIS (Netherlands)

Baars, J.E.; Dulmen, A.M. van; Velthuizen, M.E.; Theunissen, E.B.; Vrouenraets, B.C.; Kimmings, A.N.; Dalen, T. van; Ooijen, B. van; Witkamp, A.J.; Aa, M.A. van der; Ausems, M.G.

2016-01-01

Certain ethnic groups seem to have less access to cancer genetic counseling. Our study was to investigate the participation in cancer genetic counseling among migrant breast cancer patients of Turkish and Moroccan origin. Hospital medical records of Turkish and Moroccan and of a comparative group of

Vitamin d status in patients with chronic obstructive pulmonary disease who participate in pulmonary rehabilitation

DEFF Research Database (Denmark)

Ringbaek, Thomas; Martinez, Gerd; Durakovic, Amal

2011-01-01

PURPOSE: Vitamin D deficiency is common in patients with chronic obstructive pulmonary disease; however, no study has evaluated the influence of vitamin D status on effects of pulmonary rehabilitation (PR). METHODS: We studied 311 patients, who participated in a 7-week outpatient PR. Vitamin D...... higher body mass index and fat-free mass index, had worse quality of life score, tended to have lower percent predicted value for forced expiratory volume in the first second of expiration, and more frequently were current smokers. They had a 3-time higher risk of dropout from the PR program (P = .003...

Internet Use Frequency and Patient-Centered Care: Measuring Patient Preferences for Participation Using the Health Information Wants Questionnaire

Science.gov (United States)

Wang, Mo; Feldman, Robert; Zhou, Le

2013-01-01

Background The Internet is bringing fundamental changes to medical practice through improved access to health information and participation in decision making. However, patient preferences for participation in health care vary greatly. Promoting patient-centered health care requires an understanding of the relationship between Internet use and a broader range of preferences for participation than previously measured. Objective To explore (1) whether there is a significant relationship between Internet use frequency and patients’ overall preferences for obtaining health information and decision-making autonomy, and (2) whether the relationships between Internet use frequency and information and decision-making preferences differ with respect to different aspects of health conditions. Methods The Health Information Wants Questionnaire (HIWQ) was administered to gather data about patients’ preferences for the (1) amount of information desired about different aspects of a health condition, and (2) level of decision-making autonomy desired across those same aspects. Results The study sample included 438 individuals: 226 undergraduates (mean age 20; SD 2.15) and 212 community-dwelling older adults (mean age 72; SD 9.00). A significant difference was found between the younger and older age groups’ Internet use frequencies, with the younger age group having significantly more frequent Internet use than the older age group (younger age group mean 5.98, SD 0.33; older age group mean 3.50, SD 2.00; t 436=17.42, PInternet use frequency was positively related to the overall preference rating (γ=.15, PInternet users preferred significantly more information and decision making than infrequent Internet users. The relationships between Internet use frequency and different types of preferences varied: compared with infrequent Internet users, frequent Internet users preferred more information but less decision making for diagnosis (γ=.57, PInternet users in their preferences

Does participation in a weight control program also improve clinical and functional outcomes for Chinese patients with schizophrenia treated with olanzapine?

Directory of Open Access Journals (Sweden)

Montgomery W

2014-07-01

Full Text Available William Montgomery,1 Tamas Treuer,2 Wenyu Ye,3 Hai Bo Xue,4 Sheng Hu Wu,4 Li Liu,4 Zbigniew Kadziola,5 Michael D Stensland,6 Haya Ascher-Svanum7 1Global Health Outcomes Eli Lilly Australia Pty Ltd, West Ryde, NSW, Australia; 2Neuroscience Research, Eli Lilly and Company, Budapest, Hungary; 3Global Statistical Sciences, Lilly Suzhou Pharmaceutical Company, Ltd, Shanghai, People's Republic of China; 4Medical Department, Lilly Suzhou Pharmaceutical Company, Ltd, Shanghai, People's Republic of China; 5Global Statistical Sciences, Eli Lilly GmbH, Vienna, Republic of Austria; 6Agile Outcomes Research, Inc., Rochester, MN, USA; 7Global Health Outcomes, Eli Lilly and Company, Indianapolis, IN, USA Objectives: This study examined whether participation in a weight control program (WCP by patients with schizophrenia treated with olanzapine was also associated with improvements in clinical and functional outcomes. Methods: A post-hoc analysis was conducted using data from the Chinese subgroup (n=330 of a multi-country, 6-month, prospective, observational study of outpatients with schizophrenia who initiated or switched to oral olanzapine. At study entry and monthly visits, participants were assessed with the Clinical Global Impression of Severity, and measures of patient insight, social activities, and work impairment. The primary comparison was between the 153 patients who participated in a WCP at study entry (n=93 or during the study (n=60 and the 177 patients who did not participate in a weight control program (non-WCP. Mixed Models for Repeated Measures with baseline covariates were used to compare outcomes over time. Kaplan–Meier survival analysis was used to assess time to response. Results: Participants had a mean age of 29.0 years and 29.3 years, and 51.0% and 57.6% were female for WCP and non-WCP groups, respectively. Average initiated daily dose for olanzapine was 9.5±5.4 mg. WCP participants gained less weight than non-participants (3.9 kg vs

Regaining a sense of agency and shared self-reliance: the experience of advanced disease cancer patients participating in a multidimensional exercise intervention while undergoing chemotherapy--analysis of patient diaries.

Science.gov (United States)

Midtgaard, Julie; Stelter, Reinhard; Rørth, Mikael; Adamsen, Lis

2007-04-01

Evidence is emerging that exercise can reduce psychological distress in cancer patients undergoing treatment. The present study aimed to (qualitatively) explore the experiences of advanced disease cancer patients participating in a 6-week, 9-hours weekly, structured, group-based multidimensional exercise intervention while undergoing chemotherapy. Unstructured diaries from a purposive sample of three females and two males (28-52 years old) who participated in the program served as the database. Data were analyzed using a phenomenological, narrative method. The analysis yielded three themes: shifting position, self-surveillance, and negotiated strength. The intervention highlighted situations making it possible for the participants to negate psychological and physical constraints. The concept of structured exercise contains viable psychotherapeutic potentials by allowing the development of alternative bodily and mental realities complying with cancer patients' demands and abilities to regain autonomy and commitment to discover and adopt a sense of agency and shared self-reliance.

Participation of informal caregivers in the hospital care of elderly patients and their evaluations of the care given: pilot study in three different hospitals.

Science.gov (United States)

Laitinen, P

1992-10-01

This action research is an ongoing study which will last from 1991 to 1993. The main purpose of the study is to increase the participation of informal caregivers in the hospital care of elderly patients without decreasing the quality of care. The data reported here are from a pilot study. This study had three aims: (a) to test reliability and validity of the measure used, (b) to investigate the current participation of informal caregivers in the hospital care of elderly patients (aged over 75), and (c) to evaluate and compare the quality of care from both the patients' and the informal caregivers' point of view in three different hospitals. The measure of quality of care was developed on the basis of need theories, mainly those of Maslow and Alderfer. Patients and caregivers were also asked to rate the participation of the caregivers in the hospital care of elderly patients. Participation consisted of 18 activities of daily living. The pilot test with 18 elderly hospital patients and seven family members or significant others showed differences between the two groups in perception of care received. Statistically significant differences (P needs, psychic and spiritual needs and totals. The results supported earlier findings that elderly patients are satisfied with and do not criticize their care. The younger generation (i.e. their children) is more demanding and has precise perceptions about the care given. Relatives could be used more in planning, evaluation and even implementation of care; however, their current participation in patient hospital care is minimal.

Factors influencing childhood cancer patients to participate in a combined physical and psychosocial intervention program : Quality of Life in Motion

NARCIS (Netherlands)

Van Dijk-Lokkart, Elisabeth M.; Braam, Katja I.; Huisman, Jaap; Kaspers, Gertjan Jl; Takken, Tim; Veening, Margreet A.; Bierings, MB; Merks, Hans; Grootenhuis, Martha A.; Eibrink, Marry; Streng, Isabelle C.; Van Dulmen-Den Broeder, Eline

Background For a multi-center randomized trial investigating the effects of a 12-week physical and psychosocial intervention program for children with cancer, we invited 174 patients (8-18 years old) on treatment or within 1 year after treatment; about 40% participated. Reasons for non-participation

[Nurses' participation in the development of a multidisciplinary team for chronic and terminal patients].

Science.gov (United States)

Shimizu, H E; Guitierrez, B A

1997-08-01

Since long ago the nurse has become more concerned about the delivery of care for patients with chronic and degeneratives diseases. Nevertheless, the accomplishment of this task is not an easy one. Moreover, when the patient reaches the final stage. Usually this patient experiences emotional and physical alteration. The family is deeply involved in this process and generally they seek nurses help because they are the closest ones to the patient and his/her family. When the patient go trough this dramatic acute change in health condition or in face of chronic degenerative or final stage disease is made, the relationship with the family becomes more difficult demanding nursing intervention. The objective of this study is to report the experience of nurse's participation in the implantation and development of multidisciplinary group for treatment of chronical and final stage patients. This group has been working for two years and has had good results. This group has worked treatment schemes for treatment used by all members of multidisciplinary team. From previous experiences, we knew that there is always a discrepancy between the information given by professional and friends and relatives ones. Which could increase fear and anxiety the reassurance given by the health team, a fair distribution of tasks and the information delivery to the patient proved to be successful.

Participating in an International Stereotactic Radiotherapy Patient Registry: The Establishment of Data Collection Pathways.

Science.gov (United States)

Yahya, Aylin; Arneric, Eva; Kernutt, Elizabeth; Baldacchino, Fiona; Haworth, Claire; Kedda, Mary-Anne; Tang, Colin; Bydder, Sean; Corica, Tammy

2017-06-29

Aim To describe data collection pathways and practical challenges experienced by an academic comprehensive cancer centre aiming to record clinical data for patients being treated with a novel radiotherapy treatment modality. Methods Various options to capture data from all patients treated with the CyberKnife Robotic Radiosurgery System at Sir Charles Gairdner Hospital (SCGH) in Western Australia were explored. An international multicenter web-based secure database established and maintained by the Radiosurgery Society the RSSearch® Patient Registry was selected. Data were collected and entered over four contiguous phases, with either opt-in or opt-out consent and the completion of Patient Reported Outcome questionnaires for specific sub-groups. Results Between April 2014 and June 2016, 461 patients at Sir Charles Gairdner Hospital were enrolled in the RSSearch® Patient Registry with the collection of over 17,500 data items. From 461 patients enrolled, 447 patients were treated with the CyberKnife Robotic Radiosurgery System. The majority of patients were treated for either a malignant primary (43.2%) or metastatic disease (39.4%). The establishment of matrix organisational processes for data collection led to the development of improved workflow patterns and data collection pathways. Conclusions This article describes the processes developed by a single centre to establish an efficient system for data collection and participation in an international registry. The opt-out approach was more efficient in terms of patient recruitment compared to the informed-consent method used in earlier phases. The experience of this single centre may help inform other institutions considering data collection options for assessments of new or novel treatments.

Nurses Exploring the Spirituality of Their Patients With Cancer: Participant Observation on a Medical Oncology Ward.

Science.gov (United States)

van Meurs, Jacqueline; Smeets, Wim; Vissers, Kris C P; Groot, Marieke; Engels, Yvonne

2017-07-19

Attention for spirituality should be an integral part of professionals' caregiving. Particularly, nurses caring for patients with cancer might have opportunities to give attention to this dimension. The aim of this study was to gain insight in the way and extent to which nurses during daily caregiving observe and explore spiritual issues of hospitalized patients with cancer. We performed an ethnographic study with participant observation. Data were collected in 2015 during 4 shifts at the medical oncology department of a university hospital. The researcher, a spiritual care provider (chaplain) wearing the same kind of uniform as the nurses, observed the nurses, participated in their actions, and interviewed them after the shift. Although the patients did send many implicit and explicit messages concerning spiritual issues, the nurses did not explore them. If noticed, 3 barriers for exploring spiritual issues were mentioned by the nurses: lack of time, conflict with their mindset, and being reserved to talk about such issues. During their daily caregiving to patients with a life-threatening illness, nurses have many opportunities to explore spiritual issues, but they do not often recognize them. If they do, they tend not to explore the spiritual issues. Communication training for nurses is necessary to develop skills for exploring the spiritual dimension in patients with cancer. In such training, attention to the misconception that such a conversation requires a lot of time and for recognizing signals from patients inviting an exploration of their concerns is necessary.This is an open-access article distributed under the terms of the Creative Commons Attribution-Non Commercial-No Derivatives License 4.0 (CCBY-NC-ND), where it is permissible to download and share the work provided it is properly cited. The work cannot be changed in any way or used commercially without permission from the journal.

Pre-dialysis patients' perceived autonomy, self-esteem and labor participation: associations with illness perceptions and treatment perceptions. A cross-sectional study

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Kaptein Ad A

2010-12-01

Full Text Available Abstract Background Compared to healthy people, patients with chronic kidney disease (CKD participate less in paid jobs and social activities. The aim of the study was to examine a the perceived autonomy, self-esteem and labor participation of patients in the pre-dialysis phase, b pre-dialysis patients' illness perceptions and treatment perceptions, and c the association of these perceptions with autonomy, self-esteem and labor participation. Methods Patients (N = 109 completed questionnaires at home. Data were analysed using bivariate and multivariate analyses. Results The results showed that the average autonomy levels were not very high, but the average level of self-esteem was rather high, and that drop out of the labor market already occurs during the pre-dialysis phase. Positive illness and treatment beliefs were associated with higher autonomy and self-esteem levels, but not with employment. Multiple regression analyses revealed that illness and treatment perceptions explained a substantial amount of variance in autonomy (17% and self-esteem (26%. The perception of less treatment disruption was an important predictor. Conclusions Patient education on possibilities to combine CKD and its treatment with activities, including paid work, might stimulate positive (realistic beliefs and prevent or challenge negative beliefs. Interventions focusing on these aspects may assist patients to adjust to CKD, and ultimately prevent unnecessary drop out of the labor market.

Factors associated with depression in pediatric cancer patients, and participation of nursing in its detection

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Sandra Velásquez-Silva

2015-07-01

Full Text Available The objective of this work is to describe what are the factors associated with depression in pediatric patients with cancer and how nurses can participate in its detection. We conducted an integrative review of articles published between 2000 and 2012. Fifteen articles were selected and then critically analyzed and organized by subjects according to their purpose. Among factors associated with depression are the following: personal factors: adaptability, developmental level and physical functioning, cognitive and emotional level, gender, form of coping and psychological reactions, self-esteem, appearance and body image and changes in lifestyle; family and social factors: family support and social support; factors related to the disease and treatment: hospitalization, medical and nursing procedures, insulation, stage of cancer disease, side effects of chemotherapy, quality of care and non-opportune identification of psychological disorders. We concluded that there are personal and family and disease and treatment factors that are constituted as predictors and modulators of depression and are related to the risk or on set of depression in pediatric patients with cancer. Within nursing actions include the assessment of the factors, participation in interdisciplinary groups and promoting social support networks.

The role of appraisal and coping style in relation with societal participation in fatigued patients with multiple sclerosis: a cross-sectional multiple mediator analysis.

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van den Akker, Lizanne Eva; Beckerman, Heleen; Collette, Emma Hubertine; Bleijenberg, Gijs; Dekker, Joost; Knoop, Hans; de Groot, Vincent

2016-10-01

To determine the relationship between appraisal and societal participation in fatigued patients with Multiple Sclerosis (MS), and whether this relation is mediated by coping styles. 265 severely-fatigued MS patients. Appraisal, a latent construct, was created from the General Self-Efficacy Scale and the helplessness and acceptance subscales of the Illness Cognition Questionnaire. Coping styles were assessed using the Coping Inventory Stressful Situations (CISS21) and societal participation was assessed using the Impact on Participation and Autonomy. A multiple mediator model was developed and tested by structural equation modeling on cross-sectional data. We corrected for confounding by disease-related factors. Mediation was determined using a product-of-coefficients approach. A significant relationship existed between appraisal and participation (β = 0.21, 95 % CI 0.04-0.39). The pathways via coping styles were not significant. In patients with severe MS-related fatigue, appraisal and societal participation show a positive relationship that is not mediated by coping styles.

Adolescent and Young Adult Patient Engagement and Participation in Survey-Based Research: A Report From the "Resilience in Adolescents and Young Adults With Cancer" Study.

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Rosenberg, Abby R; Bona, Kira; Wharton, Claire M; Bradford, Miranda; Shaffer, Michele L; Wolfe, Joanne; Baker, Kevin Scott

2016-04-01

Conducting patient-reported outcomes research with adolescents and young adults (AYAs) is difficult due to low participation rates and high attrition. Forty-seven AYAs with newly diagnosed cancer at two large hospitals were prospectively surveyed at the time of diagnosis and 3-6 and 12-18 months later. A subset participated in 1:1 semistructured interviews. Attrition prompted early study closure at one site. The majority of patients preferred paper-pencil to online surveys. Interview participants were more likely to complete surveys (e.g., 93% vs. 58% completion of 3-6 month surveys, P = 0.02). Engaging patients through qualitative methodologies and using patient-preferred instruments may optimize future research success. © 2015 Wiley Periodicals, Inc.

Invited to Participate?

DEFF Research Database (Denmark)

Nielsen, Karen Dam

paper show the specific challenges patients, and subsequently clinicians, encounter when engaging with an e-health system that is vested with multiple ideas about what patient participation involves. Each of these three papers proposes an analytical concept for opening up the workings of patient......-involving e-health: ‘participatory scopic devices‘, ‘dialogic filtration work‘, and ‘participatory tactics‘. In particular, these concepts add to the analytics of STS and CSCW for studying sociotechnical reconfigurations of healthcare. However, the concepts may also inform the wider field of research into e...

Social anxiety in physical activity participation in patients with mental illness: a cross-sectional multicenter study.

Science.gov (United States)

De Herdt, Amber; Knapen, Jan; Vancampfort, Davy; De Hert, Marc; Brunner, Emanuel; Probst, Michel

2013-08-01

Social anxiety (SA) is a frequent comorbid condition in patients with mental illness. However, no data exist regarding SA in physical activity (PA) situations. The aim of the present study was to measure the level of self-reported SA in PA participation in patients with mental illness compared to healthy controls. Six hundred ninety-three patients with mental illness and 2,888 controls aged between 18 and 65 years completed the Physical Activity and Sport Anxiety Scale (PASAS). Group and gender differences in PASAS scores were tested by ANOVA and Scheffé's post hoc test. After controlling for gender (P mental illness reported higher levels of SA in PA situations compared to healthy control subjects. Health professionals should consider SA when trying to improve outcome and adherence of patients with mental illness to PA interventions. © 2013 Wiley Periodicals, Inc.

Consumer participation in quality improvements for chronic disease care: development and evaluation of an interactive patient-centered survey to identify preferred service initiatives.

Science.gov (United States)

Fradgley, Elizabeth A; Paul, Christine L; Bryant, Jamie; Roos, Ian A; Henskens, Frans A; Paul, David J

2014-12-19

With increasing attention given to the quality of chronic disease care, a measurement approach that empowers consumers to participate in improving quality of care and enables health services to systematically introduce patient-centered initiatives is needed. A Web-based survey with complex adaptive questioning and interactive survey items would allow consumers to easily identify and prioritize detailed service initiatives. The aim was to develop and test a Web-based survey capable of identifying and prioritizing patient-centered initiatives in chronic disease outpatient services. Testing included (1) test-retest reliability, (2) patient-perceived acceptability of the survey content and delivery mode, and (3) average completion time, completion rates, and Flesch-Kincaid reading score. In Phase I, the Web-based Consumer Preferences Survey was developed based on a structured literature review and iterative feedback from expert groups of service providers and consumers. The touchscreen survey contained 23 general initiatives, 110 specific initiatives available through adaptive questioning, and a relative prioritization exercise. In Phase II, a pilot study was conducted within 4 outpatient clinics to evaluate the reliability properties, patient-perceived acceptability, and feasibility of the survey. Eligible participants were approached to complete the survey while waiting for an appointment or receiving intravenous therapy. The age and gender of nonconsenters was estimated to ascertain consent bias. Participants with a subsequent appointment within 14 days were asked to complete the survey for a second time. A total of 741 of 1042 individuals consented to participate (71.11% consent), 529 of 741 completed all survey content (78.9% completion), and 39 of 68 completed the test-retest component. Substantial or moderate reliability (Cohen's kappa>0.4) was reported for 16 of 20 general initiatives with observed percentage agreement ranging from 82.1%-100.0%. The majority of

Consumer Participation in Quality Improvements for Chronic Disease Care: Development and Evaluation of an Interactive Patient-Centered Survey to Identify Preferred Service Initiatives

Science.gov (United States)

Paul, Christine L; Bryant, Jamie; Roos, Ian A; Henskens, Frans A; Paul, David J

2014-01-01

Background With increasing attention given to the quality of chronic disease care, a measurement approach that empowers consumers to participate in improving quality of care and enables health services to systematically introduce patient-centered initiatives is needed. A Web-based survey with complex adaptive questioning and interactive survey items would allow consumers to easily identify and prioritize detailed service initiatives. Objective The aim was to develop and test a Web-based survey capable of identifying and prioritizing patient-centered initiatives in chronic disease outpatient services. Testing included (1) test-retest reliability, (2) patient-perceived acceptability of the survey content and delivery mode, and (3) average completion time, completion rates, and Flesch-Kincaid reading score. Methods In Phase I, the Web-based Consumer Preferences Survey was developed based on a structured literature review and iterative feedback from expert groups of service providers and consumers. The touchscreen survey contained 23 general initiatives, 110 specific initiatives available through adaptive questioning, and a relative prioritization exercise. In Phase II, a pilot study was conducted within 4 outpatient clinics to evaluate the reliability properties, patient-perceived acceptability, and feasibility of the survey. Eligible participants were approached to complete the survey while waiting for an appointment or receiving intravenous therapy. The age and gender of nonconsenters was estimated to ascertain consent bias. Participants with a subsequent appointment within 14 days were asked to complete the survey for a second time. Results A total of 741 of 1042 individuals consented to participate (71.11% consent), 529 of 741 completed all survey content (78.9% completion), and 39 of 68 completed the test-retest component. Substantial or moderate reliability (Cohen’s kappa>0.4) was reported for 16 of 20 general initiatives with observed percentage agreement

Using perceptual mapping methods to understand gender differences in perceived barriers and benefits of clinical research participation in urban minority HIV+ patients.

Science.gov (United States)

Bass, Sarah Bauerle; Wolak, Caitlin; Greener, Judith; Tedaldi, Ellen; Nanavati, Aasit; Ruppert, Katey; Gordon, Thomas F

2016-01-01

Minority participation in HIV clinical trials research is critical to understanding the impact of medications or behavioral interventions, but little is known about gender differences in perceptions of participation. We surveyed 50 minority HIV+ patients from an urban clinic to assess perceived risks/benefits of clinical trial research participation and used innovative marketing methods to analyze results. Perceptual mapping and vector message-modeling, a method that creates 3-D models representing how groups conceptualize elements, were used to assess how male and female participants could be motivated to participate. Results showed men farther away from participation and more concerned with HIV disclosure and experimentation than women. Men expressed distrust of the medical system, doubted HIV's origin, and knew less about research implementation. Women were closer to participation in both behavior and medical trials and perceived medication issues as more significant, including fear of losing medication stability, medications not working, being in the placebo group, and experiencing side effects. Vector modeling shows that messages would need to focus on different aspects of clinical research for men and women and that interventions aimed at minority HIV+ patients to encourage clinical trial participation would need to be targeted to their unique perceptions. Understanding gender perceptions of HIV clinical research has significant implications for targeting messages to increase minority participation.

Older patients’ participation in team meetings—A phenomenological study from the nurses’ perspective

Directory of Open Access Journals (Sweden)

ELISABETH Lindberg,

2013-12-01

Full Text Available Although the importance of patient participation is acknowledged in today's healthcare, many challenges remain before patient participation can become an integral part of care provision. The ward round has traditionally been the forum for crucial decisions about patient care, but often with limited possibilities for patient participation. As part of the process of improving patient participation, the round in the present study has been replaced by a team meeting (TM to which the patient has been invited. The aim of this study is to highlight nurses’ experiences of older patients’ participation in TMs. The research process was guided by the principles of phenomenological reflective life world research. Data were collected in a Swedish hospital, in a ward specializing in older patients. Nine nurses, who had invited and planned for a patient to participate in TMs and/or had experienced TMs in which patients participated, were interviewed. The essential meaning of patient participation in the TM, as experienced by the nurses, is that patient participation can be supported by a safe relationship in which the patient can make his or her voice heard. Participation is challenged by the patients’ vulnerability and by the subordinated role assigned to the patient. The essential meaning is further described by its constituents: “the need for a guide,” “patient participation challenged by structures,” and “creating space for the whole human being.” In conclusion, the nurse plays a core role in guiding the patient in an unfamiliar situation. The meaning of patient participation in the TM needs to be discussed by professionals so that the patient perspective is present.

Characteristics of Patients Accepting and Declining Participation in a Transition of Care Service Provided by a Community Pharmacy

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Julianne M Kowalski, PharmD

2017-02-01

Full Text Available Objectives: To identify characteristics of patients who accepted or declined an appointment for a transition of care service provided by an independent community pharmacist and identify the most common reasons patients declined the service. Methods: A transition of care service was offered by a community pharmacy to patients discharged to home from the cardiac unit of a local hospital. The community pharmacist approached patients prior to discharge for recruitment into the service. Outcomes included service acceptance rate, LACE score at discharge, readmission risk category, age, gender, geographic home location, and reason for refusing the service. Descriptive statistics and logistic regression were used to compare characteristics between those who accepted or declined the service. Reasons for decline were assessed using content analysis. Results: Of the 87 patients that were included in the analysis, 21 patients received the transitions of care service (24.1%. None of the characteristics were found to be statistically significant between patients who received or declined the service. Patients at a moderate risk for readmission seemed more likely to accept the pharmacist-run appointment than those at high risk (27.9% vs 15.3%; P = 0.29. Of the 66 patients who declined, 51 gave a reason (77.3%. Thirty-nine patients saw no benefit (76.5%, five patients had perceived barriers (10%, and seven patients gave reasons that fell into both categories (13.5%. Conclusions: This evaluation did not find a statistically significant difference in characteristics between those patients who accepted or declined participation in a pharmacist-run transition of care service. Patients may be less likely to accept pharmacist-run transition of care appointments primarily due to no perceived benefits. To increase participation, we need to understand the patient’s health beliefs, educate patients on pharmacy services, and implement changes to recruit potential

Characteristic adverse events and their incidence among patients participating in acute ischemic stroke trials.

Science.gov (United States)

Hesse, Kerrick; Fulton, Rachael L; Abdul-Rahim, Azmil H; Lees, Kennedy R

2014-09-01

Adverse events (AE) in trial populations present a major burden to researchers and patients, yet most events are unrelated to investigational treatment. We aimed to develop a coherent list of expected AEs, whose incidence can be predicted by patient characteristics that will inform future trials and perhaps general poststroke care. We analyzed raw AE data from patients participating in acute ischemic stroke trials. We identified events that occurred with a lower 99% confidence bound greater than nil. Among these, we applied receiver operating characteristic principles to select the fewest types of events that together represented the greatest number of reports. Using ordinal logistic regression, we modeled the incidence of these events as a function of patient age, sex, baseline National Institutes of Health Stroke Scale, and multimorbidity status, defining Ppatients, reporting 21 217 AEs. Among 756 types of AEs, 132 accounted for 82.7%, of which 80% began within 10 days after stroke. Right hemisphere (odds ratio [OR], 1.67), increasing baseline National Institutes of Health Stroke Scale (OR, 1.11), multimorbidity status (OR, 1.09 per disease), patient age (OR, 1.01 per year), height (OR, 1.01 per centimeter), diastolic blood pressure (OR, 0.99 per mm Hg), and smoking (OR, 0.82) were independently associated with developing more AEs but together explained only 13% of the variation. A list of 132 expected AEs after acute ischemic stroke may be used to simplify interpretation and reporting of complications. AEs can be modestly predicted by patient characteristics, facilitating stratification of patients by risk for poststroke complications. © 2014 American Heart Association, Inc.

French general practitioners' attitudes and reported practices in relation to their participation and effectiveness in a minimal smoking cessation programme for patients.

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Slama, K; Karsenty, S; Hirsch, A

1999-01-01

To examine the participation and effectiveness of GPs in offering a minimal smoking cessation intervention according to attitudinal and reported behaviour variables. General practitioners were surveyed about their practices and attitudes and then matched pairs of smoking and non-smoking doctors were invited to participate in a regional smoking cessation intervention. The relationship of survey responses and the degree of participation and effectiveness in a smoking cessation trial was examined. Primary care doctors in a large region of southern France, Provence-Alpes-Côte d'Azur (PACA). Two thousand, eight hundred and sixty GPs from the PACA region in France were interviewed about their attitudes and behaviours. From among 371 smoking GPs and 375 non-smoking GPs invited to take part in a smoking cessation trial with patients, 170 smokers and 202 non-smokers participated. The GPs' attitudes and reported professional and personal practices were assessed in a telephone interview. These responses were compared with the GPs' participation in the cessation trial, and with GP "success" (1 or more patients stopping smoking at 1 month, 12 months or both) or "non-success" (no patient cessation at 1 month or at 12 months). A significantly lower proportion of smokers than non-smokers among the GPs who initially accepted did not participate in the study (45% vs. 54.1%, chi 2 = 5.147 df = 1, p attitudes and the extent of their participation or effectiveness. The study results indicate that, when minimal advice has an effect, it is due more to the systematic nature of the provision of the intervention than to the attitudes or reported practices of the practitioner providing the advice.

Evaluation of quality of life and psychological aspects of Parkinson's disease patients who participate in a support group

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Nathalie Ribeiro Artigas

Full Text Available Parkinson's disease (PD is a neurodegenerative disorder that can dramatically impair patient quality of life (QoL.Objective:To analyze the QoL, motor capacity, depression, anxiety and social phobia of individuals who attended a patient support group (PSG compared to non-participants.Methods:A cross-sectional study was performed. The sample consisted of 20 individuals with PD who attended a PSG and another 20 PD patients who did not attend a support group for PD patients, serving as the control group (nPSG. All patients answered questionnaires on motor capacity (UPDRS, QoL (Parkinson's Disease Questionnaire- PDQ-39, depression (Beck Depression Inventory, anxiety (Beck Anxiety Inventory and social phobia (Liebowitz Social Anxiety Scale. To determine data distribution, the Shapiro-Wilk test was performed. For comparison of means, Student's t-test was applied. In cases of asymmetry, the Mann-Whitney test was employed. To assess the association between the scales, Pearson's correlation coefficient (symmetric distribution and Spearman's coefficient (asymmetric distribution were applied. For the association between qualitative variables, Pearson's Chi-squared test was performed. A significance level of 5% (p≤0.05 was adopted.Results:Individuals in the PSG had a significantly better QoL (p=0.002, and lower depression (p=0.026, anxiety (p<0.001 and social phobia (p=0.01 scores compared to the nPSG.Conclusion:The participation of PD patients in social activities such as support groups is associated with better QoL and fewer symptoms of depression, anxiety and social phobia.

Red Flags for Maltese Adults with Congenital Heart Disease: Poorer Dental Care and Less Sports Participation Compared to Other European Patients-An APPROACH-IS Substudy.

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Caruana, Maryanne; Apers, Silke; Kovacs, Adrienne H; Luyckx, Koen; Thomet, Corina; Budts, Werner; Sluman, Maayke; Eriksen, Katrine; Dellborg, Mikael; Berghammer, Malin; Johansson, Bengt; Soufi, Alexandra; Callus, Edward; Moons, Philip; Grech, Victor

2017-06-01

Studies in recent years have explored lifestyle habits and health-risk behaviours in adult congenital heart disease (ACHD) patients when compared to controls. The aim of this study was to investigate differences in lifestyle habits between Maltese and other European ACHD patients. Data on alcohol consumption, cigarette smoking, substance misuse, dental care and physical activity collected in 2013-2015 during "Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart disease-International Study" (APPROACH-IS) were analysed. Responses from 119 Maltese participants were compared to those of 1616 participants from Belgium, France, Italy, Norway, Sweden, Switzerland and the Netherlands. Significantly fewer Maltese patients with simple (Maltese 84.1% vs. European 97.5%, p < 0.001) and moderately complex CHD (Maltese 83.6% vs. European 97.4%, p < 0.001) brushed their teeth daily. Only 67.2% of Maltese with moderately complex disease had dental reviews in the previous year compared to 80.3% of Europeans (p = 0.02). Maltese patients with simple (Maltese 31.8% vs. European 56.1%, p = 0.002) and moderately complex lesions (Maltese 30.0% vs. European 59.2%, p < 0.001) performed less regular sport activities. Comparison by country showed Maltese patients to have significantly poorer tooth brushing and sports participation than patients from any other participating country. Alcohol consumption, cigarette smoking and substance misuse were not significantly different. This study highlights lifestyle aspects that Maltese ACHD patients need to improve on, which might not be evident upon comparing patients to non-CHD controls. These findings should also caution researchers against considering behaviours among patients in one country as necessarily representative of patients on the larger scale.

Combining value of information analysis and ethical argumentation in decisions on participation of vulnerable patients in clinical research.

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van der Wilt, Gert J; Grutters, Janneke P C; Maas, Angela H E M; Rolden, Herbert J A

2018-02-05

The participation of vulnerable patients in clinical research poses apparent ethical dilemmas. Depending on the nature of the vulnerability, their participation may challenge the ethical principles of autonomy, non-maleficence, or justice. On the other hand, non-participation may preclude the building of a knowledge base that is a prerequisite for defining the optimal clinical management of vulnerable patients. Such clinical uncertainty may also incur substantial economic costs. We present the participation of pre-menopausal women with atrial fibrillation in trials of novel oral anticoagulant drugs as a case study. Due to their non-participation in pivotal trials, it is uncertain whether for them, the risks that are associated with these drugs are outweighed by the advantages compared with conventional treatment. We addressed the question whether research of this new class of drugs in this subgroup would be appropriate from both, an ethical as well an economic perspective. We used the method of specifying norms as a wider framework to resolve the apparent ethical dilemma, while incorporating the question whether research of oral anticoagulants in premenopausal women with atrial fibrillation can be justified on economic grounds. For the latter, the results of a value-of-information analysis were used. Further clinical research on NOACs in premenopausal women with atrial fibrillation can be justified on both, ethical and economic grounds. Addressing apparent ethical dilemmas by invoking a method such as specifying norms can improve the quality of public practical reasoning. As such, the method should also prove valuable to committees that have formally been granted the authority to review trial protocols and proposals for scientific research.

Patients' experiences of care and support at home after a family member's participation in an intervention during palliative care.

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Norinder, Maria; Goliath, Ida; Alvariza, Anette

2017-06-01

Patients who receive palliative home care are in need of support from family members, who take on great responsibility related to caregiving but who often feel unprepared for this task. Increasing numbers of interventions aimed at supporting family members in palliative care have been described and evaluated. It is not known whether and how these interventions actually affect the care or support provided to a patient, even though it has been suggested that family members would be likely to provide better care and support and thus allow for positive experiences for patients. However, this has not been studied from the perspective of the patients themselves. The objective of our study was to explore patients' experiences of care and support at home after family members' participation in a psychoeducational intervention during palliative care. Our study took a qualitative approach, and interviews were conducted with 11 patients whose family members had participated in a psychoeducational intervention during palliative home care. The interviews were analyzed employing interpretive description. Patients' experiences were represented by three themes: "safe at home," "facilitated and more honest communication," and "feeling like a unit of care." Patients felt that their needs were better met and that family members became more confident at home without risking their own health. Patients felt relieved when family members were given the opportunity to talk and reflect with others and hoped that the intervention would contribute to more honest communications between themselves and their family members. Further, it was of great importance to patients that family members receive attention from and be confirmed and supported by healthcare professionals. Our findings show how an intervention targeted at family members during palliative home care also benefits the patients.

Online activity and participation in treatment affects the perceived efficacy of social health networks among patients with chronic illness.

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Magnezi, Racheli; Bergman, Yoav S; Grosberg, Dafna

2014-01-10

The use of online health-related social networks for support, peer-to-peer connections, and obtaining health information has increased dramatically. Participation in an online health-related social network can enhance patients' self-efficacy and empowerment, as they are given knowledge and tools to manage their chronic health condition more effectively. Thus, we can deduce that patient activation, the extent to which individuals are able to manage their own health care, also increases. However, little is known about the effects of participation in online health-related social networks and patient activation on the perceived usefulness of a website across disease groups. The intent of the study was to evaluate the effects and benefits of participation in an online health-related social network and to determine which variables predict perceived site usefulness, while examining patient activation. Data were collected from "Camoni", the first health-related social network in the Hebrew language. It offers medical advice, including blogs, forums, support groups, internal mail, chats, and an opportunity to consult with experts. This study focused on the site's five largest and most active communities: diabetes, heart disease, kidney disease, spinal injury, and depression/anxiety. Recruitment was conducted during a three-month period in which a link to the study questionnaire was displayed on the Camoni home page. Three questionnaires were used: a 13-item measure of perceived usefulness (Cronbach alpha=.93) to estimate the extent to which an individual found the website helpful and informative, a 9-item measure of active involvement in the website (Cronbach alpha=.84), and The Patient Activation Measure (PAM-13, Cronbach alpha=.86), which assesses a patient's level of active participation in his or her health care. There were 296 participants. Men 30-39 years of age scored higher in active involvement than those 40-49 years (P=.03), 50-64 years (P=.004), or 65+ years (P

[Ethical problems surrounding decision making by means of patient participation and public health oriented overall risk approaches].

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Wehkamp, Karl-Heinz

2008-01-01

Strengthening citizen participation, patient rights and patient autonomy places more and more responsibility for achieving certain health care goals on the health care consumer ('customer'). Public health based governance using tools and concepts of health economics consider this a responsibility of physicians and hospitals. The two concepts are not fully compatible. Holding health care providers responsible for goals which, in part, are beyond their control is unfair from an ethical point of view. Politics should accept that physicians are responsible for the quality of their services, and not for the health of the individual.

Improved health-related quality of life, participation, and autonomy in patients with treatment-resistant chronic pain after an intensive social cognitive intervention with the participation of support partners

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Jongen PJ

2017-12-01

Full Text Available Peter Joseph Jongen,1,2 Rob P Ruimschotel,3 YM Museler-Kreijns,4 TMC Dragstra,4 L Duyverman,3 J Valkenburg-Vissers,5 J Cornelissen,6 R Lagrand,7 Rogier Donders,8 A Hartog1Department of Community and Occupational Medicine, University Medical Centre Groningen, Groningen, 2MS4 Research Institute, Nijmegen, 3Medical Psychiatric Centre PsyToBe, 4DC Klinieken Rotterdam, Rotterdam, 5Fysiotherapie Maaspoort, ‘s Hertogenbosch, 6Dansjobs, Landsmeer, 7Fysio- en Manuele Therapie R. & Y.M. Lagrand, Rotterdam, 8Department for Health Evidence, Radboud University Medical Centre, Nijmegen, The NetherlandsAbstract: Despite the availability of various specific treatments, most patients with chronic pain (CP consider their pain problem as undertreated. Recently, multiple sclerosis (MS patients who were given an intensive 3-day social cognitive treatment with the participation of support partners experienced lasting improvements in health-related quality of life (HRQoL and self-efficacy. In this study, a similar intervention was given to treatment-resistant CP patients with stressors, relational problems with support partner, and distress, anxiety or depression. Before and 1, 3, and 6 months after the intervention, patients completed the Euro-Qol 5 Dimensions 5 Levels (EQ-5D-5L and Impact on Participation and Autonomy (IPA questionnaires (primary outcomes, and the Survey Of Pain Attitudes (SOPA, the Four-Dimensional Symptom Questionnaire (4DSQ (distress, depression, anxiety, and somatization, and Visual Analog Scale for pain intensity, whereas the support partners completed the Caregiver Strain Index (CSI questionnaire. Differences between baseline and post-treatment were tested via paired t-tests (significance level 0.05. Of the 39 patients who were included, 34 (87.2% completed the 3-day treatment. At 1, 3, and 6 months, improvements were seen in EQ-5D-5L-Index (+40.6%; +22.4%; +31.7%, Health Today (+61.8%; +36.3%; +46.8%, Control attitude (+45.8%; not

The emergency patient's participation in medical decision-making.

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Wang, Li-Hsiang; Goopy, Suzanne; Lin, Chun-Chih; Barnard, Alan; Han, Chin-Yen; Liu, Hsueh-Erh

2016-09-01

The purpose of this research was to explore the medical decision-making processes of patients in emergency departments. Studies indicate that patients should be given enough time to acquire relevant information and receive adequate support when they need to make medical decisions. It is difficult to satisfy these requirements in emergency situations. Limited research has addressed the topic of decision-making among emergency patients. This qualitative study used a broadly defined grounded theory approach to explore decision-making in an emergency department in Taiwan. Thirty emergency patients were recruited between June and December 2011 for semi-structured interviews that were audio-taped and transcribed verbatim. The study identified three stages in medical decision-making by emergency patients: predecision (interpreting the problem); decision (a balancing act) and postdecision (reclaiming the self). Transference was identified as the core category and pattern of behaviour through which patients resolved their main concerns. This transference around decision-making represents a type of bricolage. The findings fill a gap in knowledge about the decision-making process among emergency patients. The results inform emergency professionals seeking to support patients faced with complex medical decision-making and suggest an emphasis on informed patient decision-making, advocacy, patient-centred care and in-service education of health staff. © 2016 John Wiley & Sons Ltd.

Strategies for improving participation in diabetes education. A qualitative study.

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Ingmar Schäfer

Full Text Available OBJECTIVE: Diabetes mellitus is highly prevalent and can lead to serious complications and mortality. Patient education can help to avoid negative outcomes, but up to half of the patients do not participate. The aim of this study was to analyze patients' attitudes towards diabetes education in order to identify barriers to participation and develop strategies for better patient education. METHODS: We conducted a qualitative study. Seven GP practices were purposively selected based on socio-demographic data of city districts in Hamburg, Germany. Study participants were selected by their GPs in order to increase participation. Semi-structured face-to-face interviews were conducted with 14 patients. Interviews were audiotaped and transcribed verbatim. The sample size was determined by data saturation. Data were analysed by qualitative content analysis. Categories were determined deductively and inductively. RESULTS: The interviews yielded four types of barriers: 1 Statements and behaviour of the attending physician influence the patients' decisions about diabetes education. 2 Both, a good state of health related to diabetes and physical/psychosocial comorbidity can be reasons for non-participation. 3 Manifold motivational factors were discussed. They ranged from giving low priority to diabetes to avoidance of implications of diabetes education as being confronted with illness narratives of others. 4 Barriers also include aspects of the patients' knowledge and activity. CONCLUSIONS: First, physicians should encourage patients to participate in diabetes education and argue that they can profit even if actual treatment and examination results are promising. Second, patients with other priorities, psychic comorbidity or functional limitations might profit more from continuous individualized education adapted to their specific situation instead of group education. Third, it might be justified that patients do not participate in diabetes education if

Strategies for improving participation in diabetes education. A qualitative study.

Science.gov (United States)

Schäfer, Ingmar; Pawels, Marc; Küver, Claudia; Pohontsch, Nadine Janis; Scherer, Martin; van den Bussche, Hendrik; Kaduszkiewicz, Hanna

2014-01-01

Diabetes mellitus is highly prevalent and can lead to serious complications and mortality. Patient education can help to avoid negative outcomes, but up to half of the patients do not participate. The aim of this study was to analyze patients' attitudes towards diabetes education in order to identify barriers to participation and develop strategies for better patient education. We conducted a qualitative study. Seven GP practices were purposively selected based on socio-demographic data of city districts in Hamburg, Germany. Study participants were selected by their GPs in order to increase participation. Semi-structured face-to-face interviews were conducted with 14 patients. Interviews were audiotaped and transcribed verbatim. The sample size was determined by data saturation. Data were analysed by qualitative content analysis. Categories were determined deductively and inductively. The interviews yielded four types of barriers: 1) Statements and behaviour of the attending physician influence the patients' decisions about diabetes education. 2) Both, a good state of health related to diabetes and physical/psychosocial comorbidity can be reasons for non-participation. 3) Manifold motivational factors were discussed. They ranged from giving low priority to diabetes to avoidance of implications of diabetes education as being confronted with illness narratives of others. 4) Barriers also include aspects of the patients' knowledge and activity. First, physicians should encourage patients to participate in diabetes education and argue that they can profit even if actual treatment and examination results are promising. Second, patients with other priorities, psychic comorbidity or functional limitations might profit more from continuous individualized education adapted to their specific situation instead of group education. Third, it might be justified that patients do not participate in diabetes education if they have slightly increased blood sugar values only and no

A qualitative study of blood and marrow transplant patient experiences participating in art making and music listening.

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Mische Lawson, Lisa; Wedan, Lindsay; Stock, Morgan; Glennon, Cathy

2016-06-01

To explore patient experiences of engaging in art making or music listening while receiving treatment in a blood and marrow transplant clinic. Researchers recruited 25 individuals receiving blood and marrow transplant (BMT) treatment, 12 men and 13 women aged 22 to 74, from a Midwestern outpatient BMT clinic. Participants engaged in a painting activity or listened to music on an iPad using an internet music application for one hour. Researchers interviewed participants after the one-hour activity to gain insight into participants' perceptions of the art making or music listening experience. Interviews were recorded, transcribed verbatim, and independently coded by members of the research team. Researchers met on several occasions to analyse codes and agree on emerging themes. Nine themes emerged from the data including, Engaging in Activity, Art and Music in Daily Life, Expression, Engaging with Equipment, Novelty, BMT Process, Activity Process, Social Support, and Living Situation. Participants enjoyed art making and music listening and found the activities beneficial during treatment. Participants benefited from art making and music listening because these activities increased the variety of options available during treatment, allowed for self-expression, and could be done alone or with caregivers. Copyright © 2016 Elsevier Ltd. All rights reserved.

Social participation after successful kidney transplantation

NARCIS (Netherlands)

Van der Mei, Sijrike F.; Van Sonderen, Eric L. P.; Van Son, Willem J.; De Jong, Paul E.; Groothoff, Johan W.; Van den Heuvel, Wim J. A.

2007-01-01

Purpose. To explore and describe the degree of social participation after kidney transplantation and to examine associated factors. Method. A cross-sectional study on 239 adult patients 1-7.3 years after kidney transplantation was performed via in-home interviews on participation in obligatory

Tailoring of the Tell-us Card communication tool for nurses to increase patient participation using Intervention Mapping.

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van Belle, Elise; Zwakhalen, Sandra M G; Caris, Josien; Van Hecke, Ann; Huisman-de Waal, Getty; Heinen, Maud

2018-02-01

To describe the tailoring of the Tell-us Card intervention for enhanced patient participation to the Dutch hospital setting using Intervention Mapping as a systematic approach. Even though patient participation is essential in any patient-to-nurse encounter, care plans often fail to take patients' preferences into account. The Tell-us Card intervention seems promising, but needs to be tailored and tested before implementation in a different setting or on large scale. Description of the Intervention Mapping framework to systematically tailor the Tell-us Card intervention to the Dutch hospital setting. Intervention Mapping consists of: (i) identification of the problem through needs assessment and determination of fit, based on patients and nurses interviews and focus group interviews; (ii) developing a logic model of change and matrices, based on literature and interviews; (iii) selection of theory-based methods and practical applications; (iv) producing programme components and piloting; (v) planning for adoption, implementation and sustainability; and (vi) preparing for programme evaluation. Knowledge, attitude, outcome expectations, self-efficacy and skills were identified as the main determinants influencing the use of the Tell-us Card. Linking identified determinants and performance objectives with behaviour change techniques from the literature resulted in a well-defined and tailored intervention and evaluation plan. The Tell-us Card intervention was adapted to fit the Dutch hospital setting and prepared for evaluation. The Medical Research Council framework was followed, and the Intervention Mapping approach was used to prepare a pilot study to confirm feasibility and relevant outcomes. This article shows how Intervention Mapping is applied within the Medical Research Council framework to adapt the Tell-us Card intervention, which could serve as a guide for the tailoring of similar interventions. © 2017 John Wiley & Sons Ltd.

Association of competitive and recreational sport participation with cardiac events in patients with arrhythmogenic right ventricular cardiomyopathy: results from the North American multidisciplinary study of arrhythmogenic right ventricular cardiomyopathy

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Ruwald, Anne-Christine; Marcus, Frank; Estes, N.A. Mark; Link, Mark; McNitt, Scott; Polonsky, Bronislava; Calkins, Hugh; Towbin, Jeffrey A.; Moss, Arthur J.; Zareba, Wojciech

2015-01-01

Aims It has been proposed that competitive sport increases the risk of ventricular tachyarrhythmias (VTA) and death in patients with arrhythmogenic right-ventricular cardiomyopathy (ARVC). However, it is unknown whether this only applies to competitive sport or if recreational sports activity also increases the risk of VTA/death. Methods and results Probands diagnosed with ARVC according to the 2010 task force criteria for ARVC (n = 108) were included in the current analysis. At the time of enrolment, study participants were questioned about exercise level prior to and after ARVC diagnosis, within three categories of sports participation: competitive (n = 41), recreational (n = 48), and inactive (n = 19). Competitive sport was associated with a significantly higher risk of VTA/death when compared with both recreational sport [HR = 1.99 (1.21–3.28), P = 0.007] and inactive patients [HR = 2.05 (1.07–3.91), P = 0.030]. No increased risk of VTA/death was associated with recreational sport when compared with patients who were inactive [HR = 1.03 (0.54–1.97), P = 0.930]. Symptoms developed at an earlier age in patients who participated in competitive sport (30 ± 12 years), when compared with patients who participated in recreational sport (38 ± 17 years) (P = 0.015) and inactive patients (41 ± 11 years) (P = 0.002). No difference in age at first symptom was seen between patients who participated in recreational sport and inactive patients (P = 0.651). Conclusion Competitive sport was associated with a two-fold increased risk of VTA/death, and earlier presentation of symptoms, when compared with inactive patients, and to patients who participated in recreational sport. When compared with inactive patients, recreational sport was not associated with earlier onset of symptoms or increased risk of VTA/death. Clinical trials.gov identifier NCT00024505. PMID:25896080

Aerobic capacity explains physical functioning and participation in patients with multiple sclerosis-related fatigue

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Emma Rosalie Driehuis

2018-01-01

Full Text Available Objective: To investigate whether aerobic capacity explains the level of self-reported physical activity, physical functioning, and participation and autonomy in daily living in persons with multiple sclerosis-related fatigue. Design: A cross-sectional study. Patients: Sixty-two participants with multiple sclerosis-related fatigue. Methods: Aerobic capacity was measured with a leg ergometer and was expressed as maximal oxygen uptake (VO2max, in ml/kg/min. Physical activity was measured with the Physical Activity Scale for Individuals with Physical Disabilities (PASIPD, physical functioning with the Short Form 36 – physical functioning (SF36-pf, and participation and autonomy in daily living with the Impact on Participation and Autonomy questionnaire (IPA. Multiple regression analyses were performed, adjusted for potential confounders (gender, age, body mass index, educational level, and employment status. Results: Mean maximal oxygen uptake (VO2max was 23.9 ml/kg/min (standard deviation (SD 6.3 ml/kg/min. There was no significant relationship between VO2max and physical activity (PASIPD: β = 0.320, 95% confidence interval (95% CI = –0.109 to 0.749, R2 = 10.8%. Higher VO2max correlated with better physical functioning (SF36-pf: β = 1.527, 95% CI = 0.820–2.234, R2 = 25.9%, and was significantly related to IPA domains “autonomy indoors” (β = –0.043, 95% CI = –0.067 to –0.020, R2 = 20.6%, “autonomy outdoors” (β = –0.037, 95% CI = –0.062 to –0.012, R2 = 18.2% and “social life and relationships” (β=–0.033, 95% CI = –0.060 to –0.007, R2 = 21.3%. Conclusion: Maximum aerobic capacity was severely reduced in persons with multiple sclerosis-related fatigue. This partly explains the limited physical functioning and restrictions in participation and autonomy indoors, outdoors and in social life and relationships in these persons.

Patients with gout have short telomeres compared with healthy participants: association of telomere length with flare frequency and cardiovascular disease in gout.

Science.gov (United States)

Vazirpanah, N; Kienhorst, L B E; Van Lochem, E; Wichers, C; Rossato, M; Shiels, P G; Dalbeth, N; Stamp, L K; Merriman, T R; Janssen, M; Radstake, T R D J; Broen, J Ca

2017-07-01

Chronic inflammation associates with increased senescence, which is a strong predictor for cardiovascular disease. We hypothesised that inflammation accelerates senescence and thereby enhances the risk of cardiovascular disease in gout. We assessed replicative senescence by quantifying telomere length (TL) in a discovery cohort of 145 Dutch patients with gout and 273 healthy individuals and validated our results in 474 patients with gout and 293 healthy participants from New Zealand. Subsequently, we investigated the effect of cardiovascular disease on TL of all participants. Also, we measured TL of CD4 + and CD8 + T lymphocytes, B lymphocytes, monocytes, natural killer cells and plasmacytoid dendritic cells. Additionally, we assessed the potential temporal difference in TL and telomerase activity. TL in PBMCs of healthy donors decreased over time, reflecting normal ageing. Patients with gout demonstrated shorter telomeres (p=0.001, R 2 =0.01873). In fact, the extent of telomere erosion in patients with gout was higher at any age compared with healthy counterparts at any age (pgout with cardiovascular disease had the shortest telomeres and TL was an independent risk factor for cardiovascular disease in patients with gout (p=0.001). TL was inversely associated with the number of gouty flares (p=0.005). Patients with gout have shorter telomeres than healthy participants, reflecting increased cellular senescence. Telomere shortening was associated with the number of flares and with cardiovascular disease in people with gout. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.

High participation rate among 25 721 patients with broad age range in a hospital-based research project involving whole-genome sequencing - the Lausanne Institutional Biobank.

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Bochud, Murielle; Currat, Christine; Chapatte, Laurence; Roth, Cindy; Mooser, Vincent

2017-10-24

We aimed to evaluate the interest of adult inpatients and selected outpatients in engaging in a large, real-life, hospital-based, genomic medicine research project and in receiving clinically actionable incidental findings. Within the framework of the cross-sectional Institutional Biobank of Lausanne, Switzerland, a total of 25721 patients of the CHUV University Hospital were systematically invited to grant researchers access to their biomedical data and to donate blood for future analyses, including whole-genome sequencing. Multivariable logistic regression analysis was used to identify personal factors, including age, gender, religion, ethnicity, citizenship, education level and mode of admission, associated with willingness to participate in this genomic research project and with interest in receiving clinically actionable incidental findings. The overall participation rate was 79% (20343/25721). Participation rate declined progressively with age, averaging 83%, 75%, 67% and 62% in patients aged rate, but not with higher willingness to receive incidental findings within the population who had agreed to participate. A large proportion of adult patients, even among the elderly, are willing to actively participate and receive incidental findings in this systematic hospital-based precision and genomic medicine research program with broad consent.

A randomised controlled trial to improve general practitioners' services in cancer rehabilitation: Effects on general practitioners' proactivity and on patients' participation in rehabilitation activities

DEFF Research Database (Denmark)

Bergholdt, SH; Søndergaard, J; Larsen, PV

2013-01-01

by their GP reported by the patients and GPs, respectively, and patients' participation in rehabilitation activities. Methods. Cluster randomised controlled trial. All general practices in Denmark were randomised to an intervention group or to a control group (usual procedures). Patients were subsequently...

Participant observation of time allocation, direct patient contact and simultaneous activities in hospital physicians

Directory of Open Access Journals (Sweden)

Zupanc Andrea

2009-06-01

Full Text Available Abstract Background Hospital physicians' time is a critical resource in medical care. Two aspects are of interest. First, the time spent in direct patient contact – a key principle of effective medical care. Second, simultaneous task performance ('multitasking' which may contribute to medical error, impaired safety behaviour, and stress. There is a call for instruments to assess these aspects. A preliminary study to gain insight into activity patterns, time allocation and simultaneous activities of hospital physicians was carried out. Therefore an observation instrument for time-motion-studies in hospital settings was developed and tested. Methods 35 participant observations of internists and surgeons of a German municipal 300-bed hospital were conducted. Complete day shifts of hospital physicians on wards, emergency ward, intensive care unit, and operating room were continuously observed. Assessed variables of interest were time allocation, share of direct patient contact, and simultaneous activities. Inter-rater agreement of Kappa = .71 points to good reliability of the instrument. Results Hospital physicians spent 25.5% of their time at work in direct contact with patients. Most time was allocated to documentation and conversation with colleagues and nursing staff. Physicians performed parallel simultaneous activities for 17–20% of their work time. Communication with patients, documentation, and conversation with colleagues and nursing staff were the most frequently observed simultaneous activities. Applying logit-linear analyses, specific primary activities increase the probability of particular simultaneous activities. Conclusion Patient-related working time in hospitals is limited. The potential detrimental effects of frequently observed simultaneous activities on performance outcomes need further consideration.

Emotions related to participation restrictions as experienced by patients with early rheumatoid arthritis: a qualitative interview study (the Swedish TIRA project).

Science.gov (United States)

Östlund, Gunnel; Björk, Mathilda; Thyberg, Ingrid; Thyberg, Mikael; Valtersson, Eva; Stenström, Birgitta; Sverker, Annette

2014-01-01

Psychological distress is a well-known complication in rheumatoid arthritis (RA), but knowledge regarding emotions and their relationship to participation restrictions is scarce. The objective of the study was to explore emotions related to participation restrictions by patients with early RA. In this study, 48 patients with early RA, aged 20-63 years, were interviewed about participation restrictions using the critical incident technique. Information from transcribed interviews was converted into dilemmas and linked to International Classification of Functioning, Disability, and Health (ICF) participation codes. The emotions described were condensed and categorized. Hopelessness and sadness were described when trying to perform daily activities such as getting up in the mornings and getting dressed, or not being able to perform duties at work. Sadness was experienced in relation to not being able to continue leisure activities or care for children. Examples of fear descriptions were found in relation to deteriorating health and fumble fear, which made the individual withdraw from activities as a result of mistrusting the body. Anger and irritation were described in relation to domestic and employed work but also in social relations where the individual felt unable to continue valued activities. Shame or embarrassment was described when participation restrictions became visible in public. Feelings of grief, aggressiveness, fear, and shame are emotions closely related to participation restrictions in everyday life in early RA. Emotions related to disability need to be addressed both in clinical settings in order to optimize rehabilitative multi-professional interventions and in research to achieve further knowledge.

Experience of a patient with an extracorporeal ventricular assist system who participated in a sleepover program.

Science.gov (United States)

Gon, Shigeyoshi; Suematsu, Yoshihito; Morizumi, Sei; Shimizu, Tsuyoshi

2011-09-01

A 19-year-old woman suffered fulminant myocarditis owing to a mycoplasma infection and was inserted with an intra-aortic balloon pump and a percutaneous cardiopulmonary support. Antibiotics and gamma globulin were administered, however, the patient's cardiac function did not recover, and the TOYOBO ventricular assist device (VAD) was implanted. She had rehabilitation training such as maintaining a standing position at the bedside and walking in the hospital, and a hospital outing program to a family restaurant was conducted two times with the VAD. The patient wished to attend the coming-of-age ceremony in Tachikawa city, which is 3 h away from our hospital by car. Therefore, we planned the program including a night stay at her home. The patient and her family fully understood the risks and wished to participate in the sleepover program. In preparing for the sleepover, the patient and her family learned to operate the VAD, and she was able to move to the lavatory and through the house with the help of only her family. A physician and a clinical engineer stayed at her house for infusion of antibiotics and management of sudden changes. There was no adverse event. In Japan, the community support of patients with VAD is not yet established, and we hope that our experience becomes a help to support return to society for patients with VAD.

Factors Associated with Participation in Pulmonary Tuberculosis Screening Using Chest X-Ray among Diabetes Mellitus Type II Patients in Denpasar, Bali, Indonesia.

Science.gov (United States)

Putra, I Gusti Ngurah Edi; Astuti, Putu Ayu Swandewi; Suarjana, I Ketut; Mulyawan, Ketut Hari; Duana, I Made Kerta; Kurniasari, Ni Made Dian; Putra, I Wayan Gede Artawan Eka

2018-01-01

Diabetes mellitus (DM) increases the risk of developing pulmonary tuberculosis (TB) disease. Therefore, pulmonary TB screening among DM patients is essential. This study aimed to identify factors associated with participation of DM type II patients in pulmonary TB screening using chest X-ray. This was a cross-sectional analytic study and was part of TB-DM screening study in Denpasar, Bali, Indonesia. The sample consisted of 365 DM type II patients selected by quota sampling among DM type II patients joining the screening program from January until March 2016 in 11 public health centres in Denpasar. Data were collected via structured interviews. The contributing factors were determined by modified Poisson regression test for cross-sectional data. From the findings, less than half (45.48%) of DM type II patients participated in chest X-ray examination for TB. Factors associated with participation in pulmonary TB screening were having a higher educational level [APR = 1.34, 95% CI (1.07-1.67)], having family member who developed pulmonary TB disease [APR = 1.47, 95% CI (1.12-1.93)], the travel time to referral hospital for screening being ≤ 15 minutes [APR = 1.6, 95% CI (1.26-2.03)], having health insurance [APR = 2.69, 95% CI (1.10-6.56)], and receiving good support from health provider [APR = 1.35, 95% CI (1.06-1.70)]. Therefore, training for health provider on providing counselling, involvement of family members in screening process, and improving the health insurance coverage and referral system are worth considering.

Prospective Preference Assessment of Patients' Willingness to Participate in a Randomized Controlled Trial of Intensity-Modulated Radiotherapy Versus Proton Therapy for Localized Prostate Cancer

Energy Technology Data Exchange (ETDEWEB)

Shah, Anand [Department of Radiation Oncology, University of Pennsylvania, Philadelphia, PA (United States); Efstathiou, Jason A.; Paly, Jonathan J. [Department of Radiation Oncology, Massachusetts General Hospital, Boston, MA (United States); Halpern, Scott D. [Department of Medicine, University of Pennsylvania, Philadelphia, PA (United States); Center for Clinical Epidemiology and Biostatistics, University of Pennsylvania, Philadelphia, PA (United States); Center for Bioethics, University of Pennsylvania, Philadelphia, PA (United States); Leonard Davis Institute of Health Economics, University of Pennsylvania, Philadelphia, PA (United States); Bruner, Deborah W. [Winship Cancer Institute, Emory University, Atlanta, GA (United States); Christodouleas, John P. [Department of Radiation Oncology, University of Pennsylvania, Philadelphia, PA (United States); Coen, John J. [Department of Radiation Oncology, Massachusetts General Hospital, Boston, MA (United States); Deville, Curtiland; Vapiwala, Neha [Department of Radiation Oncology, University of Pennsylvania, Philadelphia, PA (United States); Shipley, William U.; Zietman, Anthony L. [Department of Radiation Oncology, Massachusetts General Hospital, Boston, MA (United States); Hahn, Stephen M. [Department of Radiation Oncology, University of Pennsylvania, Philadelphia, PA (United States); Bekelman, Justin E., E-mail: bekelman@uphs.upenn.edu [Department of Radiation Oncology, University of Pennsylvania, Philadelphia, PA (United States); Leonard Davis Institute of Health Economics, University of Pennsylvania, Philadelphia, PA (United States)

2012-05-01

Purpose: To investigate patients' willingness to participate (WTP) in a randomized controlled trial (RCT) comparing intensity-modulated radiotherapy (IMRT) with proton beam therapy (PBT) for prostate cancer (PCa). Methods and Materials: We undertook a qualitative research study in which we prospectively enrolled patients with clinically localized PCa. We used purposive sampling to ensure a diverse sample based on age, race, travel distance, and physician. Patients participated in a semi-structured interview in which they reviewed a description of a hypothetical RCT, were asked open-ended and focused follow-up questions regarding their motivations for and concerns about enrollment, and completed a questionnaire assessing characteristics such as demographics and prior knowledge of IMRT or PBT. Patients' stated WTP was assessed using a 6-point Likert scale. Results: Forty-six eligible patients (33 white, 13 black) were enrolled from the practices of eight physicians. We identified 21 factors that impacted patients' WTP, which largely centered on five major themes: altruism/desire to compare treatments, randomization, deference to physician opinion, financial incentives, and time demands/scheduling. Most patients (27 of 46, 59%) stated they would either 'definitely' or 'probably' participate. Seventeen percent (8 of 46) stated they would 'definitely not' or 'probably not' enroll, most of whom (6 of 8) preferred PBT before their physician visit. Conclusions: A substantial proportion of patients indicated high WTP in a RCT comparing IMRT and PBT for PCa.

Obesity and subcutaneous fat patterning in relation to survival of postmenopausal breast cancer patients participating in the DOM-project

NARCIS (Netherlands)

den Tonkelaar, I.; de Waard van de Spek, FB; Seidell, J C; Fracheboud, J

1995-01-01

The effect of obesity and fat distribution on survival of breast cancer patients was studied prospectively in 241 women with a natural menopause who participated in a breast cancer screening project, the DOM-project in Utrecht, The Netherlands. Mean follow-up time was 9.1 years and endpoint of

The effect of food on the pharmacokinetics of oral ibrutinib in healthy participants and patients with chronic lymphocytic leukemia.

Science.gov (United States)

de Jong, Jan; Sukbuntherng, Juthamas; Skee, Donna; Murphy, Joe; O'Brien, Susan; Byrd, John C; James, Danelle; Hellemans, Peter; Loury, David J; Jiao, Juhui; Chauhan, Vijay; Mannaert, Erik

2015-05-01

To assess ibrutinib pharmacokinetics under fasted and fed conditions, impact of food-intake timing, and the safety and tolerability. Three studies were analyzed. Study 1 was a randomized, open-label, single-dose, four-way crossover study in 44 healthy participants. Study 2 was a randomized, repeat-dose crossover study in 16 patients with previously treated chronic lymphocytic leukemia (CLL). Ibrutinib dose was 420 mg in both studies. Study 3 was an open-label, sequential study to assess the effect of a standard breakfast on ibrutinib 560 mg in eight healthy participants. Administration of single-dose ibrutinib under fasting conditions (study 1) resulted in approximately 60 % of exposure compared with drug intake either 30 min before, 30 min after (fed), or 2 h after a high-fat meal. Similar food effect was observed (study 3) when ibrutinib was given 30 min before meal. In CLL patients (study 2), the C max and AUC under fasting conditions were 43 and 61 %, respectively, relative to fed conditions. When administered once-daily in uncontrolled food-intake conditions (≥30 min before or 2 h after), exposures were slightly (≈30 %) lower than in fed condition. When corrected for repeated dosing, pharmacokinetic parameters in healthy participants and patients were comparable. Ibrutinib was generally well tolerated in all settings studied. Ibrutinib administered in fasted condition reduces exposure to approximately 60 % as compared with dosing in proximity to food-intake, regardless of timing/type of meal. Because repeated drug intake in fasted condition is unlikely, no food restrictions may be needed to administer ibrutinib.

Factors influencing participation of psychiatry inpatients in clinical trials.

Science.gov (United States)

Mopuru, Nandeeshwar Reddy; Jose, Sam Padamadan; Viswanath, Biju; Kumar, C Naveen; Math, Suresh Bada; Thirthalli, Jagadisha

2018-02-01

Serious concerns have arisen in recent years regarding the unethical and illegal practices resorted to during clinical trials. Clinical trials in psychiatry are further complicated by issues such as 'validity of consent' and 'decision making capacity' of patients. This study was planned to explore the factors determining patient participation in clinical trials. A random sample of 123 consenting psychiatry inpatients were provided the information and consent-form of a hypothetical clinical drug trial. They were interviewed regarding their decision, the decision maker and factors that led to the decision. Family members tended to be the decision makers when patients were females, had low-income, were from rural background or had severe illnesses. Anticipated side effects and not wanting to interfere with existing treatment were the common reasons for refusal to participate while hope of betterment of the patient and benefit to humanity were cited for consent. The educated, urban, affluent class had more awareness regarding unethical trials and tended to be mistrustful of the medical community leading to higher rates of non-participation. Those who were adherent with ongoing treatment were also unwilling to participate. The lesser educated, low-income patients and rural domicile patients on the other hand had lesser awareness regarding clinical trials, trusted doctors and were more likely to participate. A good doctor-patient relationship, detailed explanations and clarification regarding the study and its conduct, and building awareness regarding clinical trials among vulnerable groups is necessary to ensure a valid consent involving no coercion, removal of prejudices, and ethical conduct of trials. Copyright © 2017 Elsevier B.V. All rights reserved.

Disseminating results to clinical trial participants: a qualitative review of patient understanding in a post-trial population.

Science.gov (United States)

Darbyshire, Julie Lorraine; Price, Hermione Clare

2012-01-01

To identify the most appropriate format for results dissemination to maximise understanding of trial results. Qualitative. Of the original 58 4-T trial centres, 34 agreed to take part in this ancillary research. All participants from these centres were eligible. All 343 participants were sent questionnaires. The low response rate meant that we were unable to make any firm conclusions about the patients' preferred method of dissemination; however, we were able to comment on the level of understanding demonstrated by the trial participants. All 40 (12%) returned questionnaires were received from 15 centres. We received no questionnaires from over half of the centres. The questionnaires which were returned demonstrated broad satisfaction with the results letter, general enthusiasm for the trial and a variable level of understanding of the results; however, there was a high proportion of responders who were not clear on why the research was undertaken or what the results meant. The low response rate may be related to delays during the trial set-up process suggesting that interest in a study quickly wanes for both patients and centres. From this we deduce that rapid dissemination of results is needed if it is to have any impact at all. The responders are likely to reflect a biased cohort who were both enthusiastic about the research and who had a good experience during their 3 years in the 4-T trial. It is perhaps not surprising therefore that the overview is positive. That this population was still not fully informed about the purpose of the research would seem to confirm a low level of understanding among the general public which we suggest should be addressed during the consent process.

Learning to participate while shifting location in a hospital ward

DEFF Research Database (Denmark)

Kjær, Malene

2015-01-01

of the development of a professional identity for the students as they learn to become competent practitioners or members (Sacks, 1989; Schegloff, 2007) in the field of nursing. The present study shows how students and their clinical supervisors move through different locations when students are introduced to new...... practices and interactions with patients: Instruction before interaction with patient takes place in the guardroom, the interaction with the patient takes place in the patient’s room and the assessment of the performed task takes place in the guard room again. Thus different kinds of routinized...... participation and interaction emerge that are connected to the different locations. Participation is thus understood in two ways: 1) Learning to participate as a competent practitioner with a patient is learned not just in situ by the patient’s side but also by 2) participating in interaction with the clinical...

Participation of Arachidonic Acid Metabolism in the Aortic Aneurysm Formation in Patients with Marfan Syndrome

Directory of Open Access Journals (Sweden)

María E. Soto

2018-02-01

Full Text Available Marfan syndrome (MFS is a pleiotropic genetic disease involving the cardiovascular system where a fibrillin-1 mutation is present. This mutation is associated with accelerated activation of transforming growth factor β (TGFβ1 which contributes to the formation of aneurysms in the root of the aorta. There is an imbalance in the synthesis of thromboxane A2 (TXA2 and prostacyclin, that is a consequence of a differential protein expression of the isoforms of cyclooxygenases (COXs, suggesting an alteration of arachidonic acid (AA metabolism. The aim of this study was to analyze the participation of AA metabolism associated with inflammatory factors in the dilation and dissection of the aortic aneurysm in patients with MFS. A decrease in AA (p = 0.02, an increase in oleic acid (OA, TGFβ1, tumor necrosis factor alpha (TNFα, prostaglandin E2 (PGE2 (p < 0.05, and COXs activity (p = 0.002 was found. The expressions of phospholipase A2 (PLA2, cytochrome P450 (CYP450 4A, 5-lipoxygenase (5-LOX, COX2 and TXA2R (p < 0.05 showed a significant increase in the aortic aneurysm of patients with MFS compared to control subjects. COX1, 6-keto-prostaglandin 1 alpha (6-keto-PG1α and 8-isoprostane did not show significant changes. Histological examination of the aortas showed an increase of cystic necrosis, elastic fibers and collagen in MFS. The results suggest that there are inflammatory factors coupled to genetic factors that predispose to aortic endothelial dysfunction in the aortic tissue of patients with MFS. There is a decrease in the percentage of AA, associated with an increase of PLA2, COX2/TXA2R, CYP450 4A, and 5-LOX which leads to a greater synthesis of PGE2 than of 6-keto-PGF1α, thus contributing to the formation of the aortic aneurysm. The evident loss of the homeostasis in these mechanisms confirms that there is a participation of the AA pathway in the aneurysm progression in MFS.

Industry and Patient Perspectives on Child Participation in Clinical Trials: The Pediatric Assent Initiative Survey Report.

Science.gov (United States)

Lombardi, Donald; Squires, Liza; Sjostedt, Philip; Eichler, Irmgard; Turner, Mark A; Thompson, Charles

2018-01-01

Obtaining assent from children participating in clinical trials acknowledges autonomy and developmental ability to contribute to the consent process. This critical step in pediatric drug development remains poorly understood, with significant room for improving the clarity, efficiency, and implementation of the assent process. Beyond ethical necessity of informing children about their treatment, the assent process provides the advantages of including children in discussions about their diagnosis and treatment-allowing greater understanding of interventions included in the study. A formalized assent process acknowledges the child as a volunteer and provides a forum for questions and feedback. Legal, cultural, and social differences have historically prevented the development of clear, concise, and accessible materials to ensure children understand the clinical trial design. Published guidelines on obtaining pediatric assent are vague, with many decisions left to local institutional review boards and ethics committees, underscoring the need for collaboratively designed standards. To address this need, 2 surveys were conducted to quantify perspectives on assent in pediatric clinical trials. Two digital surveys were circulated in the United States and internationally (October 2014 to January 2015). The first survey targeted children, parents, and/or caregivers. The second polled clinical trial professionals on their organizations' experience and policies regarding pediatric assent. Forty-five respondents completed the child and parent/caregiver survey; 57 respondents completed the industry survey. Respondents from both surveys detailed experiences with clinical trials and the impediments to securing assent, offering potential solutions to attaining assent in pediatric patients. An important opportunity exists for standardized practices and tools to ensure pediatric patients make well-informed decisions regarding their participation in clinical trials, using materials

Participation in HIV research: the importance of clinic contact factors.

Science.gov (United States)

Worthington, Catherine A; Gill, M John

2008-08-01

Recruiting minority populations living with HIV to many types of clinic-based HIV research is a concern. This study examined an expanded range of predictors of HIV research participation (clinic contact, clinical, and personal characteristics) to investigate observed ethnocultural differences in HIV research participation. Research participation was defined as participation in any of diagnostic, pathogenesis, drug trial or survey research. Logistic regression modeling was used to predict research participation of 657 eligible patients (93% of the patient population) who began care between January 1997 and the end of September 2003 at a regional outpatient HIV care program in Calgary, Canada. Approximately one third (32%) were non-white, including 18% Aboriginal, 9% black, 4% Asian, and 1% Hispanic individuals. Twenty-nine percent (187/657) of the patients participated in at least one study of any kind. Multivariate analysis indicated that the strongest predictors of any research participation (including diagnostic, pathogenesis, drug trial, or survey studies) are clinical (including nadir CD4 count [odds ratio {OR} = 0.132, p percentage of appointments kept [OR = 1.022, p service use shown by these groups that may influence research participation. To attract under researched populations, attention should shift from the "who" of research participation to the "how" of clinical interactions.

Factors Associated with Participation in Pulmonary Tuberculosis Screening Using Chest X-Ray among Diabetes Mellitus Type II Patients in Denpasar, Bali, Indonesia

Directory of Open Access Journals (Sweden)

I Gusti Ngurah Edi Putra

2018-01-01

Full Text Available Diabetes mellitus (DM increases the risk of developing pulmonary tuberculosis (TB disease. Therefore, pulmonary TB screening among DM patients is essential. This study aimed to identify factors associated with participation of DM type II patients in pulmonary TB screening using chest X-ray. This was a cross-sectional analytic study and was part of TB-DM screening study in Denpasar, Bali, Indonesia. The sample consisted of 365 DM type II patients selected by quota sampling among DM type II patients joining the screening program from January until March 2016 in 11 public health centres in Denpasar. Data were collected via structured interviews. The contributing factors were determined by modified Poisson regression test for cross-sectional data. From the findings, less than half (45.48% of DM type II patients participated in chest X-ray examination for TB. Factors associated with participation in pulmonary TB screening were having a higher educational level [APR = 1.34, 95% CI (1.07–1.67], having family member who developed pulmonary TB disease [APR = 1.47, 95% CI (1.12–1.93], the travel time to referral hospital for screening being ≤ 15 minutes [APR = 1.6, 95% CI (1.26–2.03], having health insurance [APR = 2.69, 95% CI (1.10–6.56], and receiving good support from health provider [APR = 1.35, 95% CI (1.06–1.70]. Therefore, training for health provider on providing counselling, involvement of family members in screening process, and improving the health insurance coverage and referral system are worth considering.

Empowered to gain a new foothold in life—A study of the meaning of participating in cardiac rehabilitation to patients afflicted by a minor heart attack

Directory of Open Access Journals (Sweden)

Charlotte P. Simonÿ

2015-12-01

Full Text Available This study aimed to investigate what it means to patients afflicted by a minor heart attack to participate in cardiac rehabilitation (CR. CR is well-established internationally to support patients towards moving forward in satisfying, healthy, and well-functioning lives. Studies indicate that patients achieve improvement in quality of life when participating in CR. However, knowledge of how patients are supported during CR is sparse. Moreover, knowledge of what participating in CR means to patients afflicted by a minor heart attack is lacking. In-depth knowledge in this area is crucial in order to understand these patients’ particular gains and needs. In a phenomenological-hermeneutic frame field observations, focus group interviews, and individual interviews were conducted among 11 patients during and after their participation in CR. Field notes and transcribed interviews underwent three-phased interpretation. It was found that patients were supported to gain renewed balance in their lives during CR. Three themes were identified: (1 receiving a helpful but limited caring hand, (2 being supported to find new values in life, and (3 developing responsibility for the remaining time. The patients were carefully guided through a difficult time and supported to continue in healthy everyday lives. They were given hope which enabled them to find themselves a new foothold in life with respect to their own sense of well-being. This guidance and a sense of hopefulness were provided by heart specialists and more seasoned heart patients. In conclusion, patients were empowered to achieve a healthier lifestyle and improve their personal well-being during CR. However, structural barriers in the programme prevented adequate support regarding the patients’ total needs. Knowledge of the benefits of CR emphasizes the significance of the programme and highlights the importance of high inclusion. Efforts should be made to develop more flexible and longer lasting

The role of appraisal and coping style in relation with societal participation in fatigued patients with multiple sclerosis: a cross-sectional multiple mediator analysis

NARCIS (Netherlands)

Akker, L.E. van den; Beckerman, H.; Collette, E.H.; Bleijenberg, G.; Dekker, J.; Knoop, H.; Groot, V. de; Jong, B.A. de; et al.,

2016-01-01

To determine the relationship between appraisal and societal participation in fatigued patients with Multiple Sclerosis (MS), and whether this relation is mediated by coping styles. 265 severely-fatigued MS patients. Appraisal, a latent construct, was created from the General Self-Efficacy Scale and

The role of appraisal and coping style in relation with societal participation in fatigued patients with multiple sclerosis : a cross-sectional multiple mediator analysis

NARCIS (Netherlands)

van den Akker, Lizanne Eva; Beckerman, Heleen; Collette, Emma Hubertine; Bleijenberg, Gijs; Dekker, Joost; Knoop, Hans; de Groot, Vincent; TREFAMS-ACE study group, study group; de Groot, V.; Beckerman, H.; Malekzadeh, A.; van den Akker, L. E.; Looijmans, M.; Sanches, S. A.; Dekker, J.; Collette, E. H.; van Oosten, B. W.; Teunissen, C. E.; Blankenstein, M. A.; Eijssen, I. C J M; Rietberg, M.; Heine, M.; Verschuren, O.; Kwakkel, G.; Visser-Meily, J. M A; van de Port, I. G L; Lindeman, E.; Blikman, L. J M; van Meeteren, J.; Bussmann, J. B J; Stam, H. J.; Hintzen, R. Q.; Hacking, H. G A; Hoogervorst, E. L.; Frequin, S. T F M; Knoop, H.; de Jong, B. A.; de Laat, F. A J; Verhulsdonck, M. C.; van Munster, E. T H; Oosterwijk, C. J.; Aarts, G. J.

2016-01-01

To determine the relationship between appraisal and societal participation in fatigued patients with Multiple Sclerosis (MS), and whether this relation is mediated by coping styles. 265 severely-fatigued MS patients. Appraisal, a latent construct, was created from the General Self-Efficacy Scale and

Group participants' experiences of a patient-directed group-based education program for the management of type 2 diabetes mellitus.

Science.gov (United States)

Odgers-Jewell, Kate; Isenring, Elisabeth A; Thomas, Rae; Reidlinger, Dianne P

2017-01-01

The objective of this study was to explore the experiences of individuals who participated in a group-based education program, including their motivators in relation to their diabetes management, and the perceived impact of group interactions on participants' experiences and motivation for self-management. Understanding individuals diagnosed with diabetes experiences of group-based education for the management of type 2 diabetes mellitus may guide the development and facilitation of these programs. Semi-structured interviews were conducted with all individuals who participated in the intervention. Using thematic analysis underpinned by self-determination theory, we developed themes that explored participants' motivators in relation to diabetes management and the impact of group interactions on their experiences and motivation. The key themes included knowledge, experience, group interactions and motivation. Participants perceived that the group interactions facilitated further learning and increased motivation, achieved through normalization, peer identification or by talking with, and learning from the experience of others. The results support the use of patient-centred programs that prioritize group interactions over the didactic presentation of content, which may address relevant psychological needs of people diagnosed with type 2 diabetes mellitus, and improve their motivation and health behaviours. Future group-based education programs may benefit from the use of self-determination theory as a framework for intervention design to enhance participant motivation.

Evaluating nurse understanding and participation in the informed consent process.

Science.gov (United States)

Axson, Sydney A; Giordano, Nicholas A; Hermann, Robin M; Ulrich, Connie M

2017-01-01

Informed consent is fundamental to the autonomous decision-making of patients, yet much is still unknown about the process in the clinical setting. In an evolving healthcare landscape, nurses must be prepared to address patient understanding and participate in the informed consent process to better fulfill their well-established role as patient advocates. This study examines hospital-based nurses' experiences and understandings of the informed consent process. This qualitative descriptive study utilized a semi-structured interview approach identifying thematic concerns, experiences, and knowledge of informed consent across a selected population of clinically practicing nurses. Participants and research context: In all, 20 baccalaureate prepared registered nurses practicing in various clinical settings (i.e. critical care, oncology, medical/surgical) at a large northeastern academic medical center in the United States completed semi-structured interviews and a demographic survey. The mean age of participants was 36.6 years old, with a mean of 12.2 years of clinical experience. Ethical considerations: Participation in this study involved minimal risk and no invasive measures. This study received Institutional Review Board approval from the University of Pennsylvania. All participants voluntarily consented. The majority of participants (N = 19) believe patient safety is directly linked to patient comprehension of the informed consent process. However, when asked if nurses have a defined role in the informed consent process, nearly half did not agree (N = 9). Through this qualitative approach, three major nursing roles emerged: the nurse as a communicator, the nurse as an advocate, and the clerical role of the nurse. This investigation contributes to the foundation of ethical research that will better prepare nurses for patient engagement, advance current understanding of informed consent, and allow for future development of solutions. Nurses are at the forefront of

Effects of horticultural therapy on mood and heart rate in patients participating in an inpatient cardiopulmonary rehabilitation program.

Science.gov (United States)

Wichrowski, Matthew; Whiteson, Jonathan; Haas, François; Mola, Ana; Rey, Mariano J

2005-01-01

To assess the effects of horticultural therapy (HT) on mood state and heart rate (HR) in patients participating in an inpatient cardiac rehabilitation program. Cardiac rehabilitation inpatients (n = 107) participated in the study. The HT group consisted of 59 subjects (34 males, 25 females). The control group, which participated in patient education classes (PECs), consisted of 48 subjects (31 males, 17 females). Both HT sessions and PEC are components of the inpatient rehabilitation program. Each group was evaluated before and after a class in their respective modality. Evaluation consisted of the completion of a Profile of Mood States (POMS) inventory, and an HR obtained by pulse oximetry. Changes in the POMS total mood disturbance (TMD) score and HR between preintervention and postintervention were compared between groups. There was no presession difference in either TMD score (16 +/- 3.6 and 19.0 +/- 3.2, PEC and HT, respectively) or HR (73.5 +/- 2.5 and 79 +/- 1.8, PEC and HT, respectively). Immediately following the intervention, the HT TMD was significantly reduced (post-TMD = 1.6 +/- 3.2, P < .001), while PEC TMD was not significantly changed (TMD = 17.0 +/- 28.5). After intervention, HR fell in HT by 4 +/- 9.6 bpm (P < .001) but was unchanged in PEC. These findings indicate that HT improves mood state, suggesting that it may be a useful tool in reducing stress. Therefore, to the extent that stress contributes to coronary heart disease, these findings support the role of HT as an effective component of cardiac rehabilitation.

Restriction in participation in leisure activities after joint replacement: an exploratory study.

Science.gov (United States)

Wylde, Vikki; Livesey, Christine; Blom, Ashley W

2012-03-01

currently, assessment of outcomes after joint replacement is predominantly centred on impairment and activity limitation (e.g. walking), with little consideration of participation restriction. structured telephone interviews about participation in leisure activities were conducted with 56 total hip replacement (THR) and 60 total knee replacement (TKR) patients before and 1 year after joint replacement. before surgery, THR patients participated in 209 leisure activities, with an average of four leisure activities per person. TKR patients participated in 171 leisure activities, with an average of three leisure activities per person. The leisure activities were coded into four categories: sports/exercise, hobbies, social activities and holidays. Between 89 and 95% of leisure activities were rated as important by THR and TKR patients prior to surgery. Before surgery, THR patients rated 82% of leisure activities as difficult to perform because of joint problems, which decreased to 25% of leisure activities by 1-year after surgery. TKR patients rated 86% of leisure activities as difficult to perform because of joint problems, which decreased to 32% after surgery. this research highlights that participation in leisure activities is important to patients undergoing joint replacement, but that approximately a quarter of patients are unable to perform their valued leisure activities after surgery.

Public Interest in Medical Research Participation: Does It Matter if Patients or Community Members Have Helped Design the Study?

Science.gov (United States)

Cobb, Enesha M; Gebremariam, Achamyeleh; Singer, Dianne; Davis, Matthew M

2015-10-01

We determined national levels of public participation in medical research study design. We compared public interest in medical research participation (MRP) in studies overall, versus studies explicitly designed with public involvement. Cross-sectional household survey of US population in June 2013. Descriptive statistics estimated participation in medical research study design. Chi-square test compared levels of interest in MRP if respondent knew patients or community members helped design the study. Of 2,048 respondents (participation rate 60%), 5% knew someone who had helped design a medical research study. There was no association between having known someone or personal participation in study design and willingness to engage in MRP. Although the overall proportion of respondents who would consider MRP initially (51%) was similar to the proportion who would consider MRP with community member involvement in study design (49%), the changes in respondents' views across the different scenarios were significantly greater than what would have been expected by chance. We found similar levels of interest in MRP whether or not the public is involved in medical research study design. This finding may indicate that public involvement in study design, like community-based participatory research, may not affect overall rates of MRP. © 2015 Wiley Periodicals, Inc.

Prospective Preference Assessment of Patients' Willingness to Participate in a Randomized Controlled Trial of Intensity-Modulated Radiotherapy Versus Proton Therapy for Localized Prostate Cancer

International Nuclear Information System (INIS)

Shah, Anand; Efstathiou, Jason A.; Paly, Jonathan J.; Halpern, Scott D.; Bruner, Deborah W.; Christodouleas, John P.; Coen, John J.; Deville, Curtiland; Vapiwala, Neha; Shipley, William U.; Zietman, Anthony L.; Hahn, Stephen M.; Bekelman, Justin E.

2012-01-01

Purpose: To investigate patients’ willingness to participate (WTP) in a randomized controlled trial (RCT) comparing intensity-modulated radiotherapy (IMRT) with proton beam therapy (PBT) for prostate cancer (PCa). Methods and Materials: We undertook a qualitative research study in which we prospectively enrolled patients with clinically localized PCa. We used purposive sampling to ensure a diverse sample based on age, race, travel distance, and physician. Patients participated in a semi-structured interview in which they reviewed a description of a hypothetical RCT, were asked open-ended and focused follow-up questions regarding their motivations for and concerns about enrollment, and completed a questionnaire assessing characteristics such as demographics and prior knowledge of IMRT or PBT. Patients’ stated WTP was assessed using a 6-point Likert scale. Results: Forty-six eligible patients (33 white, 13 black) were enrolled from the practices of eight physicians. We identified 21 factors that impacted patients’ WTP, which largely centered on five major themes: altruism/desire to compare treatments, randomization, deference to physician opinion, financial incentives, and time demands/scheduling. Most patients (27 of 46, 59%) stated they would either “definitely” or “probably” participate. Seventeen percent (8 of 46) stated they would “definitely not” or “probably not” enroll, most of whom (6 of 8) preferred PBT before their physician visit. Conclusions: A substantial proportion of patients indicated high WTP in a RCT comparing IMRT and PBT for PCa.

Participation in cancer rehabilitation and unmet needs: a population-based cohort study

DEFF Research Database (Denmark)

Holm, L.V.; Hansen, D.G.; Johansen, C.

2012-01-01

sex, age, and diagnosis, and the outcome variables for rehabilitation. RESULTS: A total of 3,439 patients participated, yielding an overall response rate of 70%. One third of the cancer patients reported a need for physical rehabilitation and one third for psychological rehabilitation. Half...... of the patients participated in at least one activity. Unmet needs were most often reported in psychological, sexual, and financial areas. Women expressed more needs, participated more often in rehabilitation activities, and had, to a higher extent, their emotional needs fulfilled. Breast cancer patients...

Self-Reported Treatment-Associated Symptoms among Patients with Urea Cycle Disorders Participating in Glycerol Phenylbutyrate Clinical Trials

Science.gov (United States)

Nagamani, Sandesh C. S.; Diaz, George A.; Rhead, William; Berry, Susan A.; Le Mons, Cynthia; Lichter-Konecki, Uta; Bartley, James; Feigenbaum, Annette; Schulze, Andreas; Longo, Nicola; Berquist, William; Gallagher, Renata; Bartholomew, Dennis; Harding, Cary O.; Korson, Mark S.; McCandless, Shawn E.; Smith, Wendy; Vockley, Jerry; Kronn, David; Zori, Robert; Cederbaum, Stephen; Merritt, J. Lawrence; Wong, Derek; Coakley, Dion F.; Scharschmidt, Bruce F.; Dickinson, Klara; Marino, Miguel; Lee, Brendan H.; Mokhtarani, Masoud

2016-01-01

Background Health care outcomes have been increasingly assessed through health-related quality of life (HRQoL) measures. While the introduction of nitrogen-scavenging medications has improved survival in patients with urea cycle disorders (UCDs), they are often associated with side effects that may affect patient compliance and outcomes. Methods Symptoms commonly associated with nitrogen-scavenging medications were evaluated in 100 adult and pediatric participants using a non-validated UCD-specific questionnaire. Patients or their caregivers responded to a pre-defined list of symptoms known to be associated with the use of these medications. Responses were collected at baseline (while patients were receiving sodium phenylbutyrate [NaPBA]) and during treatment with glycerol phenylbutyrate (GPB). Results After 3 months of GPB dosing, there were significant reductions in the proportion of patients with treatment-associated symptoms (69% vs. 46%; p<0.0001), the number of symptoms per patient (2.5 vs. 1.1; p<0.0001), and the frequency of the more commonly reported individual symptoms such as body odor, abdominal pain, nausea, burning sensation in mouth, vomiting, and heartburn (p<0.05). The reduction in symptoms was observed in both pediatric and adult patients. The presence or absence of symptoms or change in severity did not correlate with plasma ammonia levels or NaPBA dose. Conclusions The reduction in symptoms following 3 months of open-label GPB dosing was similar in pediatric and adult patients and may be related to chemical structure and intrinsic characteristics of the product rather than its effect on ammonia control. PMID:26296711

Self-reported treatment-associated symptoms among patients with urea cycle disorders participating in glycerol phenylbutyrate clinical trials.

Science.gov (United States)

Nagamani, Sandesh C S; Diaz, George A; Rhead, William; Berry, Susan A; Le Mons, Cynthia; Lichter-Konecki, Uta; Bartley, James; Feigenbaum, Annette; Schulze, Andreas; Longo, Nicola; Berquist, William; Gallagher, Renata; Bartholomew, Dennis; Harding, Cary O; Korson, Mark S; McCandless, Shawn E; Smith, Wendy; Vockley, Jerry; Kronn, David; Zori, Robert; Cederbaum, Stephen; Merritt, J Lawrence; Wong, Derek; Coakley, Dion F; Scharschmidt, Bruce F; Dickinson, Klara; Marino, Miguel; Lee, Brendan H; Mokhtarani, Masoud

2015-01-01

Health care outcomes have been increasingly assessed through health-related quality of life (HRQoL) measures. While the introduction of nitrogen-scavenging medications has improved survival in patients with urea cycle disorders (UCDs), they are often associated with side effects that may affect patient compliance and outcomes. Symptoms commonly associated with nitrogen-scavenging medications were evaluated in 100 adult and pediatric participants using a non-validated UCD-specific questionnaire. Patients or their caregivers responded to a pre-defined list of symptoms known to be associated with the use of these medications. Responses were collected at baseline (while patients were receiving sodium phenylbutyrate [NaPBA]) and during treatment with glycerol phenylbutyrate (GPB). After 3 months of GPB dosing, there were significant reductions in the proportion of patients with treatment-associated symptoms (69% vs. 46%; p<0.0001), the number of symptoms per patient (2.5 vs. 1.1; p<0.0001), and frequency of the more commonly reported individual symptoms such as body odor, abdominal pain, nausea, burning sensation in mouth, vomiting, and heartburn (p<0.05). The reduction in symptoms was observed in both pediatric and adult patients. The presence or absence of symptoms or change in severity did not correlate with plasma ammonia levels or NaPBA dose. The reduction in symptoms following 3 months of open-label GPB dosing was similar in pediatric and adult patients and may be related to chemical structure and intrinsic characteristics of the product rather than its effect on ammonia control. Copyright © 2015 Elsevier Inc. All rights reserved.

Patients' experiences of breathing retraining for asthma: a qualitative process analysis of participants in the intervention arms of the BREATHE trial.

Science.gov (United States)

Arden-Close, Emily; Yardley, Lucy; Kirby, Sarah; Thomas, Mike; Bruton, Anne

2017-10-05

Poor symptom control and impaired quality of life are common in adults with asthma, and breathing retraining exercises may be an effective method of self-management. This study aimed to explore the experiences of participants in the intervention arms of the BREATHE trial, which investigated the effectiveness of breathing retraining as a mode of asthma management. Sixteen people with asthma (11 women, 8 per group) who had taken part in the intervention arms of the BREATHE trial (breathing retraining delivered by digital versatile disc (DVD) or face-to-face sessions with a respiratory physiotherapist) took part in semi-structured telephone interviews about their experiences. Interviews were analysed using thematic analysis. Breathing retraining was perceived positively as a method of asthma management. Motivations for taking part included being asked, to enhance progress in research, to feel better/reduce symptoms, and to reduce medication. Participants were positive about the physiotherapist, liked having the materials tailored, found meetings motivational, and liked the DVD and booklet. The impact of breathing retraining following regular practice included increased awareness of breathing and development of new habits. Benefits of breathing retraining included increased control over breathing, reduced need for medication, feeling more relaxed, and improved health and quality of life. Problems included finding time to practice the exercises, and difficulty mastering techniques. Breathing retraining was acceptable and valued by almost all participants, and many reported improved wellbeing. Face to face physiotherapy was well received. However, some participants in the DVD group mentioned being unable to master techniques. PATIENTS RECEPTIVE TO BREATHING RETRAINING: Patients with asthma taught how to change their unconscious breathing patterns generally like non-pharmacological interventions. Researchers in the UK, led by Mike Thomas from the University of Southampton

Social participation after successful kidney transplantation

OpenAIRE

Van der Mei, Sijrike F.; Van Sonderen, Eric L. P.; Van Son, Willem J.; De Jong, Paul E.; Groothoff, Johan W.; Van den Heuvel, Wim J. A.

2007-01-01

Purpose. To explore and describe the degree of social participation after kidney transplantation and to examine associated factors. Method. A cross-sectional study on 239 adult patients 1-7.3 years after kidney transplantation was performed via in-home interviews on participation in obligatory activities (i.e., employment, education, household tasks) and leisure activities (avolunteer work, assisting others, recreation, sports, clubs/associations, socializing, going out). Results. Kidney tran...

Participation in online continuing education.

Science.gov (United States)

Farrell, Barbara; Ward, Natalie; Jennings, Brad; Jones, Caitlin; Jorgenson, Derek; Gubbels-Smith, Ashley; Dolovich, Lisa; Kennie, Natalie

2016-02-01

The ADAPT (ADapting pharmacists' skills and Approaches to maximize Patients' drug Therapy effectiveness) e-learning programme requires weekly participation in module activities and facilitated discussion to support skill uptake. In this study, we sought to describe the extent and pattern of, satisfaction with and factors affecting participation in the initial programme offering and reasons for withdrawal. Mixed methods - convergent parallel approach. Participation was examined in qualitative data from discussion boards, assignments and action plans. Learner estimations of time commitment and action plan submission rates were calculated. Surveys (Likert scale and open-ended questions) included mid-point and final, exit and participation surveys. Eleven of 86 learners withdrew, most due to time constraints (eight completed an exit survey; seven said they would take ADAPT again). Thirty-five of 75 remaining learners completed a participation survey. Although 50-60% of the remaining 75 learners actively continued participating, only 15/35 respondents felt satisfied with their own participation. Learners spent 3-5 h/week (average) on module activities. Factors challenging participation included difficulty with technology, managing time and group work. Factors facilitating participation included willingness to learn (content of high interest) and supportive work environment. Being informed of programme time scheduling in advance was identified as a way to enhance participation. This study determined extent of learner participation in an online pharmacist continuing education programme and identified factors influencing participation. Interactions between learners and the online interface, content and with other learners are important considerations for designing online education programmes. Recommendations for programme changes were incorporated following this evaluation to facilitate participation. © 2015 Royal Pharmaceutical Society.

A scoping review of the literature on benefits and challenges of participating in patient education programs aimed at promoting self-management for people living with chronic illness.

Science.gov (United States)

Stenberg, Una; Haaland-Øverby, Mette; Fredriksen, Kari; Westermann, Karl Fredrik; Kvisvik, Toril

2016-11-01

To give a comprehensive overview of benefits and challenges from participating in group based patient education programs that are carried out by health care professionals and lay participants, aimed at promoting self-management for people living with chronic illness. We searched 8 literature databases. Full text articles meeting the inclusion criteria were retrieved and reviewed. Arksey and O'Malley's framework for scoping studies guided the review process and thematic analysis was undertaken to synthesize extracted data. Of the 5935 titles identified, 47 articles were included in this review. The participants experienced the programs as beneficial according to less symptom distress and greater awareness of their own health, improved self-management strategies, peer support, learning and hope. A substantial evidence base supports the conclusion that group based self-management patient education programs in different ways have been experienced as beneficial, but more research is needed. The insights gained from this review can enable researchers, health care professionals, and participants to understand the complexity in evaluating self-management patient education programs, and constitute a basis for a more standardized and systematic evaluation. The results may also encourage health care professionals in planning and carrying out programs in cooperation with lay participants. Copyright © 2016 Elsevier Ireland Ltd. All rights reserved.

The effect of a new lifetime-cardiovascular-risk display on patients' motivation to participate in shared decision-making.

Science.gov (United States)

Jegan, Nikita Roman A; Kürwitz, Sarah Anna; Kramer, Lena Kathrin; Heinzel-Gutenbrunner, Monika; Adarkwah, Charles Christian; Popert, Uwe; Donner-Banzhoff, Norbert

2018-06-09

This study investigated the effects of three different risk displays used in a cardiovascular risk calculator on patients' motivation for shared decision-making (SDM). We compared a newly developed time-to-event (TTE) display with two established absolute risk displays (i.e. emoticons and bar charts). The accessibility, that is, how understandable, helpful, and trustworthy patients found each display, was also investigated. We analysed a sample of 353 patients recruited in general practices. After giving consent, patients were introduced to one of three fictional vignettes with low, medium or high cardiovascular risk. All three risk displays were shown in a randomized order. Patients were asked to rate each display with regard to motivation for SDM and accessibility. Two-factorial repeated measures analyses of variance were conducted to compare the displays and investigate possible interactions with age. Regarding motivation for SDM, the TTE elicited the highest motivation, followed by the emoticons and bar chart (p motivation for SDM and accessibility when compared to established displays using emoticons and a bar chart. If future research can replicate these results in real-life consultations, the TTE display will be a valuable addition to current risk calculators and decision aids by improving patients' participation.

Self-Reported Employment Status and Social Participation After Successful Kidney Transplantation.

Science.gov (United States)

Parajuli, Sandesh; Singh, Jagmeet; Sandal, Shaifali; Liebman, Scott E; Demme, Richard A

2016-03-01

Kidney transplantation (KTX) is considered the treatment of choice for most individuals with end-stage kidney disease. The purpose of this study was to assess the employment status and social participation after successful KTX. This was a retrospective cross-sectional study. Eligible participants were patients who received a transplant ≥1 year ago and who were previously on hemodialysis (HD) for ≥1 year. Two hundred individuals participated in this study. A significant number (93.5%) of patients reported they were working prior to HD versus 35% while on HD. Only 14% reported receiving disability benefits prior to HD versus 75% receiving disability while on HD. Comparing transplant recipients with pre-HD patients, 35.5% versus 93.5% reported working, and 74.5% versus 14% reported receiving disability benefits, respectively. After transplant, patients were more likely to join recreational clubs, travel frequently, and participate in recreational/religious activities and social events than when they were on HD. Posttransplant, these individuals are more likely to participate in social and leisure activities, but the majority did not resume employment and continued to receive disability payments. Future studies could explore barriers to employment in patients who underwent successful transplantation and the causes and factors as to why these individuals continue to receive disability benefits. © 2016, NATCO.

Patients' participation in decision-making in the medical field

DEFF Research Database (Denmark)

Glasdam, Stinne; Oeye, Christine; Thrysøe, Lars

2015-01-01

is going to happen in his life. Both professionals and patients have an underlying, tacit preconception that every medical treatment is better than no treatment. Patients do not always want to be a ‘customer’ in the healthcare system; they want to be a patient, consulting an expert for help and advice......, which creates resistance to the some parts of the decision-making process. Both professionals and patients are subject to the structural frame of the medical field, formed of both neoliberal frame and medical logic. The decision-making competence in relation to the choice of treatment is placed away...

Jordanian Physicians' Attitudes toward Disclosure of Cancer Information and Patient Participation in Treatment Decision-making.

Science.gov (United States)

Obeidat, Rana; Khrais, Huthaifah I

2016-01-01

This study aims to determine the attitude of Jordanian physicians toward disclosure of cancer information, comfort and use of different decision-making approaches, and treatment decision making. A descriptive, comparative research design was used. A convenience sample of 86 Jordanian medical and radiation oncologists and surgeons practicing mainly in oncology was recruited. A modified version of a structured questionnaire was used for data collection. The questionnaire is a valid measure of physicians' views of shared decision making. Almost 91% of all physicians indicated that the doctor should tell the patient and let him/her decide if the family should know of an early-stage cancer diagnosis. Physicians provide abundant information about the extent of the disease, the side effects and benefits of the treatment, and details of the treatment procedures. They also provided less information on the effects of treatment on the sexuality, mood, and family of the patient. Almost 48% of the participating physicians reported using shared decision making as their usual approach for treatment decision making, and 67% reported that they were comfortable with this approach. The main setting of clinical activity was the only factor associated with physicians' usual approach to medical decision making. Moreover, age, years of experience, and main setting of clinical activity were associated with physicians' comfort level with the shared approach. Although Jordanian physicians appreciate patient autonomy, self-determination, and right to information, paternalistic decision making and underuse of the shared decision-making approach persist. Strategies that target both healthcare providers and patients must be employed to promote shared decision making in the Jordanian healthcare system.

A qualitative study of patients' experiences of participating in SPACE for COPD: a Self-management Programme of Activity, Coping and Education.

Science.gov (United States)

Apps, Lindsay D; Harrison, Samantha L; Mitchell, Katy E; Williams, Johanna E A; Hudson, Nicky; Singh, Sally J

2017-10-01

The aim of this study was to understand experiences of participation in a supported self-management programme for chronic obstructive pulmonary disease (COPD). There is a wealth of clinical trials examining the outcomes of self-management interventions for individuals with COPD, but current understanding regarding patients' perspectives of such complex interventions is limited. Further insight may help to tailor self-management interventions and maximise patient engagement. Semi-structured interviews were conducted with individuals participating in a self-management programme, SPACE for COPD. Interviews took place at 6 weeks and 6 months following the programme. Data were analysed at each time point using inductive thematic analysis, and subsequently re-examined together. 40 interviews were undertaken and four themes emerged from the analysis: perceptions of the programme; lifestyle changes; social support; and disrupting factors and barriers to maintaining routines. SPACE for COPD was acceptable to participants in this study. The importance of education and social support was emphasised at both time points studied, but there were challenges such as comorbidities, ill health of family members and limited maintenance of exercise behaviours over the longer term. Further consideration of the role of carers and partners may help to improve adherence to self-management programmes once healthcare professional support has stopped.

Patient safety climate (PSC) perceptions of frontline staff in acute care hospitals: examining the role of ease of reporting, unit norms of openness, and participative leadership.

Science.gov (United States)

Zaheer, Shahram; Ginsburg, Liane; Chuang, You-Ta; Grace, Sherry L

2015-01-01

Increased awareness regarding the importance of patient safety issues has led to the proliferation of theoretical conceptualizations, frameworks, and articles that apply safety experiences from high-reliability industries to medical settings. However, empirical research on patient safety and patient safety climate in medical settings still lags far behind the theoretical literature on these topics. The broader organizational literature suggests that ease of reporting, unit norms of openness, and participative leadership might be important variables for improving patient safety. The aim of this empirical study is to examine in detail how these three variables influence frontline staff perceptions of patient safety climate within health care organizations. A cross-sectional study design was used. Data were collected using a questionnaire composed of previously validated scales. The results of the study show that ease of reporting, unit norms of openness, and participative leadership are positively related to staff perceptions of patient safety climate. Health care management needs to involve frontline staff during the development and implementation stages of an error reporting system to ensure staff perceive error reporting to be easy and efficient. Senior and supervisory leaders at health care organizations must be provided with learning opportunities to improve their participative leadership skills so they can better integrate frontline staff ideas and concerns while making safety-related decisions. Finally, health care management must ensure that frontline staff are able to freely communicate safety concerns without fear of being punished or ridiculed by others.

Test-Retest Variability of Functional and Structural Parameters in Patients with Stargardt Disease Participating in the SAR422459 Gene Therapy Trial.

Science.gov (United States)

Parker, Maria A; Choi, Dongseok; Erker, Laura R; Pennesi, Mark E; Yang, Paul; Chegarnov, Elvira N; Steinkamp, Peter N; Schlechter, Catherine L; Dhaenens, Claire-Marie; Mohand-Said, Saddek; Audo, Isabelle; Sahel, Jose; Weleber, Richard G; Wilson, David J

2016-10-01

The goal of this analysis was to determine the test-retest variability of functional and structural measures from a cohort of patients with advanced forms of Stargardt Disease (STGD) participating in the SAR422459 (NCT01367444) gene therapy clinical trial. Twenty-two participants, aged 24 to 66, diagnosed with advanced forms of STGD, with at least one pathogenic ABCA4 mutation on each chromosome participating in the SAR422459 (NCT01367444) gene therapy clinical trial, were screened over three visits within 3 weeks or less. Functional visual evaluations included: best-corrected visual acuity (BCVA) Early Treatment Diabetic Retinopathy Study (ETDRS) letter score, semiautomated kinetic perimetry (SKP) using isopters I4e, III4e, and V4e, hill of vision (HOV) calculated from static visual fields (SVF) by using a 184n point centrally condensed grid with the stimulus size V test target. Retinal structural changes such as central macular thickness and macular volume were assessed by spectral-domain optical coherence tomography (SD-OCT). Repeatability coefficients (RC) and 95% confidential intervals (CI) were calculated for each parameter using a hierarchical mixed-effects model and bootstrapping. Criteria for statistically significant changes for various parameters were found to be the following: BCVA letter score (8 letters), SKP isopters I4e, III4e, and V4e (3478.85; 2488.02 and 2622.46 deg 2 , respectively), SVF full volume HOV (V TOT, 14.62 dB-sr), central macular thickness, and macular volume (4.27 μm and 0.15 mm 3 , respectively). This analysis provides important information necessary to determine if significant changes are occurring in structural and functional assessments commonly used to measure disease progression in this cohort of patients with STGD. Moreover, this information is useful for future trials assessing safety and efficacy of treatments in STGD. Determination of variability of functional and structural measures in participants with advanced stages of

Test–Retest Variability of Functional and Structural Parameters in Patients with Stargardt Disease Participating in the SAR422459 Gene Therapy Trial

Science.gov (United States)

Parker, Maria A.; Choi, Dongseok; Erker, Laura R.; Pennesi, Mark E.; Yang, Paul; Chegarnov, Elvira N.; Steinkamp, Peter N.; Schlechter, Catherine L.; Dhaenens, Claire-Marie; Mohand-Said, Saddek; Audo, Isabelle; Sahel, Jose; Weleber, Richard G.; Wilson, David J.

2016-01-01

Purpose The goal of this analysis was to determine the test–retest variability of functional and structural measures from a cohort of patients with advanced forms of Stargardt Disease (STGD) participating in the SAR422459 (NCT01367444) gene therapy clinical trial. Methods Twenty-two participants, aged 24 to 66, diagnosed with advanced forms of STGD, with at least one pathogenic ABCA4 mutation on each chromosome participating in the SAR422459 (NCT01367444) gene therapy clinical trial, were screened over three visits within 3 weeks or less. Functional visual evaluations included: best-corrected visual acuity (BCVA) Early Treatment Diabetic Retinopathy Study (ETDRS) letter score, semiautomated kinetic perimetry (SKP) using isopters I4e, III4e, and V4e, hill of vision (HOV) calculated from static visual fields (SVF) by using a 184n point centrally condensed grid with the stimulus size V test target. Retinal structural changes such as central macular thickness and macular volume were assessed by spectral-domain optical coherence tomography (SD-OCT). Repeatability coefficients (RC) and 95% confidential intervals (CI) were calculated for each parameter using a hierarchical mixed-effects model and bootstrapping. Results Criteria for statistically significant changes for various parameters were found to be the following: BCVA letter score (8 letters), SKP isopters I4e, III4e, and V4e (3478.85; 2488.02 and 2622.46 deg2, respectively), SVF full volume HOV (VTOT, 14.62 dB-sr), central macular thickness, and macular volume (4.27 μm and 0.15 mm3, respectively). Conclusions This analysis provides important information necessary to determine if significant changes are occurring in structural and functional assessments commonly used to measure disease progression in this cohort of patients with STGD. Moreover, this information is useful for future trials assessing safety and efficacy of treatments in STGD. Translational Relevance Determination of variability of functional and

Effect of childhood maltreatment on brain structure in adult patients with major depressive disorder and healthy participants.

LENUS (Irish Health Repository)

Chaney, Aisling

2013-07-30

Background: Childhood maltreatment has been found to play a crucial role in the development of psychiatric disorders. However, whether childhood maltreatment is associated with structural brain changes described for major depressive disorder (MDD) is still a matter of debate. The aim of this study was to investigate whether patients with MDD and a history of childhood maltreatment display more structural changes than patients without childhood maltreatment or healthy controls. Methods: Patients with MDD and healthy controls with and without childhood maltreatment experience were investigated using high-resolution magnetic resonance imaging (MRI), and data were analyzed using voxel-based morphometry. Results: We studied 37 patients with MDD and 46 controls. Grey matter volume was significantly decreased in the hippocampus and significantly increased in the dorsomedial prefrontal cortex (DMPFC) and the orbitofrontal cortex (OFC) in participants who had experienced childhood maltreatment compared with those who had not. Patients displayed smaller left OFC and left DMPFC volumes than controls. No significant difference in hippocampal volume was evident between patients with MDD and healthy controls. In regression analyses, despite effects from depression, age and sex on the DMPFC, OFC and hippocampus, childhood maltreatment was found to independently affect these regions. Limitations: The retrospective assessment of childhood maltreatment; the natural problem that patients experienced more childhood maltreatment than controls; and the restrictions, owing to sample size, to investigating higher order interactions among factors are discussed as limitations. Conclusion: These results suggest that early childhood maltreatment is associated with brain structural changes irrespective of sex, age and a history of depression. Thus, the study highlights the importance of childhood maltreatment when investigating brain structures.

Emotion recognition in early Parkinson's disease patients undergoing deep brain stimulation or dopaminergic therapy: a comparison to healthy participants

Directory of Open Access Journals (Sweden)

Lindsey G. McIntosh

2015-01-01

Full Text Available Parkinson’s disease (PD is traditionally regarded as a neurodegenerative movement disorder, however, nigrostriatal dopaminergic degeneration is also thought to disrupt non-motor loops connecting basal ganglia to areas in frontal cortex involved in cognition and emotion processing. PD patients are impaired on tests of emotion recognition, but it is difficult to disentangle this deficit from the more general cognitive dysfunction that frequently accompanies disease progression. Testing for emotion recognition deficits early in the disease course, prior to cognitive decline, better assesses the sensitivity of these non-motor corticobasal ganglia-thalamocortical loops involved in emotion processing to early degenerative change in basal ganglia circuits. In addition, contrasting this with a group of healthy aging individuals demonstrates changes in emotion processing specific to the degeneration of basal ganglia circuitry in PD. Early PD patients (EPD were recruited from a randomized clinical trial testing the safety and tolerability of deep brain stimulation of the subthalamic nucleus (STN-DBS in early-staged PD. EPD patients were previously randomized to receive optimal drug therapy only (ODT, or drug therapy plus STN-DBS (ODT+DBS. Matched healthy elderly controls (HEC and young controls (HYC also participated in this study. Participants completed two control tasks and three emotion recognition tests that varied in stimulus domain. EPD patients were impaired on all emotion recognition tasks compared to HEC. Neither therapy type (ODT or ODT+DBS nor therapy state (ON/OFF altered emotion recognition performance in this study. Finally, HEC were impaired on vocal emotion recognition relative to HYC, suggesting a decline related to healthy aging. This study supports the existence of impaired emotion recognition early in the PD course, implicating an early disruption of fronto-striatal loops mediating emotional function.

Barriers to Medicaid Participation among Florida Dentists

Science.gov (United States)

Logan, Henrietta L.; Catalanotto, Frank; Guo, Yi; Marks, John; Dharamsi, Shafik

2015-01-01

Background Finding dentists who treat Medicaid-enrolled children is a struggle for many parents. The purpose of this study was to identify non-reimbursement factors that influence the decision by dentists about whether or not to participate in the Medicaid program in Florida. Methods Data from a mailed survey was analyzed using a logistic regression model to test the association of Medicaid participation with the Perceived Barriers and Social Responsibility variables. Results General and pediatric dentists (n=882) who identified themselves as either Medicaid (14%) or Non-Medicaid (86%) participants responded. Five items emerged as significant predictors of Medicaid participation, with a final concordance index of 0.905. Two previously unreported barriers to participation in Medicaid emerged: 1) dentists’ perception of social stigma from other dentists for participating in Medicaid, and 2) the lack of specialists to whom Medicaid patients can be referred. Conclusions This study provides new information about non-reimbursement barriers to Medicaid participation. PMID:25702734

Early rehabilitation and participation in focus

DEFF Research Database (Denmark)

Pallesen, Hanne; Buhl, Inge; Roenn-Smidt, Helle

2016-01-01

Early neurorehabilitation is an interdisciplinary field. Thus, in order to eliminate unnecessary barriers for individuals with severe acquired brain injury in early rehabilitation, we need rehabilitation science that supports both quantitative and qualitative research methods. Participation can...... be studied directly and indirectly. This commentary proposes that active participation and the ‘‘lived body’’ are essential terms in early rehabilitation of severe ABI patients, and a description of how these terms are interpreted and handled in the practice is needed....

42 CFR 485.723 - Condition of participation: Physical environment.

Science.gov (United States)

2010-10-01

... 42 Public Health 5 2010-10-01 2010-10-01 false Condition of participation: Physical environment... participation: Physical environment. The building housing the organization is constructed, equipped, and..., sanitary, and comfortable environment. (a) Standard: Safety of patients. The organization satisfies the...

Barriers and facilitators to evidence based care of type 2 diabetes patients: experiences of general practitioners participating to a quality improvement program

Directory of Open Access Journals (Sweden)

Hannes Karen

2009-07-01

Full Text Available Abstract Objective To evaluate the barriers and facilitators to high-quality diabetes care as experienced by general practitioners (GPs who participated in an 18-month quality improvement program (QIP. This QIP was implemented to promote compliance with international guidelines. Methods Twenty out of the 120 participating GPs in the QIP underwent semi-structured interviews that focused on three questions: 'Which changes did you implement or did you observe in the quality of diabetes care during your participation in the QIP?' 'According to your experience, what induced these changes?' and 'What difficulties did you experience in making the changes?' Results Most GPs reported that enhanced knowledge, improved motivation, and a greater sense of responsibility were the key factors that led to greater compliance with diabetes care guidelines and consequent improvements in diabetes care. Other factors were improved communication with patients and consulting specialists and reliance on diabetes nurse educators. Some GPs were reluctant to collaborate with specialists, and especially with diabetes educators and dieticians. Others blamed poor compliance with the guidelines on lack of time. Most interviewees reported that a considerable minority of patients were unwilling to change their lifestyles. Conclusion Qualitative research nested in an experimental trial may clarify the improvements that a QIP may bring about in a general practice, provide insight into GPs' approach to diabetes care and reveal the program's limits. Implementation of a QIP encounters an array of cognitive, motivational, and relational obstacles that are embedded in a patient-healthcare provider relationship.

Motives for (not) participating in a lifestyle intervention trial

DEFF Research Database (Denmark)

Lakerveld, J.; IJzelenberg, W.; van Tulder, M.

2008-01-01

: the perception of being unhealthy and willingness to change their lifestyle. The main barriers reported by non-participants were financial arguments and time investment. Conclusion. The differences between participants and non-participants in a lifestyle intervention trial are in mainly demographic factors......Background. Non-participants can have a considerable influence on the external validity of a study. Therefore, we assessed the socio-demographic, health-related, and lifestyle behavioral differences between participants and non-participants in a comprehensive CVD lifestyle intervention trial......, and explored the motives and barriers underlying the decision to participate or not. Methods. We collected data on participants (n = 50) and non-participants (n = 50) who were eligible for inclusion in a comprehensive CVD lifestyle interventional trial. Questionnaires and a hospital patient records database...

Effectiveness of Relapse Prevention Cognitive-Behavioral Model in Opioid-Dependent Patients Participating in the Methadone Maintenance Treatment in Iran.

Science.gov (United States)

Pashaei, Tahereh; Shojaeizadeh, Davoud; Rahimi Foroushani, Abbas; Ghazitabatabae, Mahmoud; Moeeni, Maryam; Rajati, Fatemeh; M Razzaghi, Emran

2013-08-01

To evaluate the effectiveness of a relapse prevention cognitive-behavioral model, based on Marlatt treatment approach, in Opioid-dependent patients participating in the Methadone Maintenance Treatment (MMT) in Iran. The study consisted of 92 individuals treated with methadone in Iranian National Center of Addiction Studies (INCAS). Participants were randomized into two groups: educational intervention group (N=46) and control group (N=46). The intervention was comprised of 10 weekly 90 minute sessions, done during a period of 2.5 months based on the most high risk situations determined using Inventory Drug Taking Situation instrument. Relapse was defined as not showing up for MMT, drug use for at least 5 continuous days, and a positive urinary morphine test. While, only 36.4% of the intervention group relapsed into drug use, 63.6% of the control group relapsed. The result of the logistic regressions showed that the odd ratio of the variable of intervention program for the entire follow up period was 0.43 (P<0.01). Further, the odd ratio of this variable in one month, three months, and 195 days after the therapy were 0.48 (P<.03), 0.31 (P<.02), and 0.13 (P<.02) respectively that revealed that on average, the probability of relapse among individuals in the intervention group was lower than patients in control group. Relapse prevention model based on Marlatt treatment approach has an effective role in decreasing relapse rate. This model can be introduced as a complementary therapy in patients treated with methadone maintenance.

Rheumatic patients at work : a study of labour force participations and its determinants in rheumatoid arthritis, ankylosing spondylitis, and juvenile chronic arthritis

NARCIS (Netherlands)

Chorus, A.M.J.

2004-01-01

This thesis at the University of Maastricht, defended at May 7, 2004, yields several important and new findings with regard to work related quality of life, participation in the labour force and its determinants of patients with rheumatoid arthritis (RA), ankylosing spondylitis (AS) and juvenile

[Restrictions in participation in women with fibromyalgia syndrome. An explorative pilot study].

Science.gov (United States)

Ullrich, A; Farin, E; Jäckel, W H

2012-02-01

Patients with fibromyalgia syndrome are often severely restricted in their ability to participate in everyday activities and in social interaction. The aim of this study was to document female patients' subjectively-perceived limitations in participation and to develop material to generate items for a specific participation questionnaire. We collected data from 8 groups of women with fibromyalgia syndrome (n=38), and developed a hierarchical system of categories using the patients' statements (ATLAS.ti; Qualitative Data Analysis). Our final group of categories contains 10 superordinate categories. Women with fibromyalgia syndrome often describe restrictions in their relationships with other people, and the impaired ability to engage in social and leisure activities. They speak of difficulties at the workplace, while doing housework, and complain about a lack of understanding and awareness on the part of the general public. Fibromyalgia syndrome patients admit to be extremely impaired in a variety of social roles. Their statements have enabled us to develop a questionnaire that reflects the range of factors restricting participation from the patient's perspective.

Validation of the Oxford Participation and Activities Questionnaire

Directory of Open Access Journals (Sweden)

Morley D

2016-06-01

Full Text Available David Morley, Sarah Dummett, Laura Kelly, Jill Dawson, Ray Fitzpatrick, Crispin Jenkinson Health Services Research Unit, Nuffield Department of Population Health, University of Oxford, Oxford, UK Purpose: There is growing interest in the management of long-term conditions and in keeping people active and participating in the community. Testing the effectiveness of interventions that aim to affect activities and participation can be challenging without a well-developed, valid, and reliable instrument. This study therefore aims to develop a patient-reported outcome measure, the Oxford Participation and Activities Questionnaire (Ox-PAQ, which is theoretically grounded in the World Health Organization's International Classification of Functioning, Disability, and Health (ICF and fully compliant with current best practice guidelines. Methods: Questionnaire items generated from patient interviews and based on the nine chapters of the ICF were administered by postal survey to 386 people with three neurological conditions: motor neuron disease, multiple sclerosis, and Parkinson's disease. Participants also completed the Medical Outcomes Study (MOS 36-Item Short Form Health Survey (SF-36 and EQ-5D-5L. Results: Thus, 334 participants completed the survey, a response rate of 86.5%. Factor analysis techniques identified three Ox-PAQ domains, consisting of 23 items, accounting for 72.8% of variance. Internal reliability for the three domains was high (Cronbach's α: 0.81–0.96, as was test–retest reliability (intraclass correlation: 0.83–0.92. Concurrent validity was demonstrated through highly significant relationships with relevant domains of the MOS SF-36 and the EQ-5D-5L. Assessment of known-groups validity identified significant differences in Ox-PAQ scores among the three conditions included in the survey. Conclusion: Results suggest that the Ox-PAQ is a valid and reliable measure of participation and activity. The measure will now be validated in

Motives for physical exercise participation as a basis for the development of patient-oriented exercise interventions in osteoarthritis: a cross-sectional study.

Science.gov (United States)

Krauss, Inga; Katzmarek, Uwe; Rieger, Monika A; Sudeck, Gorden

2017-08-01

Physical exercises are effective in the treatment of osteoarthritis (OA). There is consensus that exercise interventions should take into account the patient's preferences and needs in order to improve compliance to exercise regimes. One important personal factor is the patient's motivation for physical exercise. Health improvement is a relevant motive for exercise participation. Accordingly, exercise interventions primarily focus on health related needs such as strengthening and pain reduction. However exercising provides further many-faceted incentives that may foster exercise adherence. The present study aimed to characterize target groups for person-tailored exercise interventions in OA according to the International Classification of Functioning and Disability and Health (ICF). Target groups should be classified by similar individual exercise participation motive profiles and further described by their disease-related symptoms, limitations and psychological determinants of exercise behavior. Observational study via self-administered questionnaires. Community. We enrolled 292 adults with hip/knee OA living independently of assistance. Participants completed the Bernese Motive and Goal Inventory in Leisure and Health Sports (BMZI), the Hannover Functional Ability Questionnaire for Osteoarthritis, the WOMAC-Index (pain/stiffness), the General Self-efficacy Scale and a questionnaire on perceived barriers to exercise participation. The BMZI-scales served as active variables for cluster analysis (Ward's method), other scales were used as passive variables to further describe the identified clusters. Four clusters were defined using five exercise participation motives: health, body/appearance, esthetics, nature, and contact. Based on the identified motive profiles the target groups are labelled health-focused sports people; sporty, nature-oriented individualists; functionalists primarily motivated by maintaining or improving health through exercise; and nature

Understanding Study Participants Views on Co-Creation of Data and Use of EHR in Clinical Studies.

Science.gov (United States)

Scott Duncan, Therese; Hägglund, Maria

2018-01-01

In order to increase clinical trial participation, the reasons for participating need to be observed. Since there is rather inadequate information concerning how individuals such as patients, decides to participate in clinical trials semi-structured interviews have been done. Examining the use of EHR in clinical trials and co-creation of data, the result showed that it is important for the researches to have access to the patients' EHR and for the patients to contribute with their own ideas of research. Important aspects of further participation in clinical trials were that it should be fun and informative. The patients agreed on that the effort of participating could decrease with the use of electronically collection and self-reporting of data, e.g. through a patient portal.

Congruence between patients’ preferred and perceived participation in medical decision-making: a review of the literature

Science.gov (United States)

2014-01-01

Background Patients are increasingly expected and asked to be involved in health care decisions. In this decision-making process, preferences for participation are important. In this systematic review we aim to provide an overview the literature related to the congruence between patients’ preferences and their perceived participation in medical decision-making. We also explore the direction of mismatched and outline factors associated with congruence. Methods A systematic review was performed on patient participation in medical decision-making. Medline, PsycINFO, CINAHL, EMBASE and the Cochrane Library databases up to September 2012, were searched and all studies were rigorously critically appraised. In total 44 papers were included, they sampled contained 52 different patient samples. Results Mean of congruence between preference for and perceived participation in decision-making was 60% (49 and 70 representing 25th and 75th percentiles). If no congruence was found, of 36 patient samples most patients preferred more involvement and of 9 patient samples most patients preferred less involvement. Factors associated with preferences the most investigated were age and educational level. Younger patients preferred more often an active or shared role as did higher educated patients. Conclusion This review suggests that a similar approach to all patients is not likely to meet patients’ wishes, since preferences for participation vary among patients. Health care professionals should be sensitive to patients individual preferences and communicate about patients’ participation wishes on a regular basis during their illness trajectory. PMID:24708833

[How to build the legitimacy of patient and consumer participation in health issues?].

Science.gov (United States)

Ghadi, V; Naiditch, M

2006-06-01

Initially introduced by Juppé in 1996, the legislative reforms of January 2nd and March 4th 2002 legally enacted new forms of consumer representation and participation in the development of the health system. However, it appears that while this new role which was created to ensure legitimate participation has been recognised by law in theory, it has not necessarily received the same recognition and incorporation in practice at the grass roots level. As a result, it is now essential to think about practical methods of representation in order to sustain local legitimacy of consumers and patients on the ground and construct it from the bottom-up. The goal of this work was to understand how and under what conditions local legitimacy for health care system consumers, as a particular group of actors, can be effectively built, independently and irrespective of the specific question of elective democratic processes. The foundation of this work is based on material which resides in the collection of data from various local participation experiments that we or other researchers have contributed to establishing in a select group of health care settings. The results of this analysis serve to update a list of principle factors through which the legitimacy of the health care system's users is constructed. Such factors include the following: the promoting agents' expectations vis-à-vis the system's users and the a priori status which is given to them; the identification and selection methods used for choosing users, and the link to the types of users in terms of representation; the nature of the "generalisation" process for decision-making, understood as the process which transforms individuals' words and perspectives into collective ones; and the conditions for and modes of interaction between laypersons and professional experts. Finally, the paper presents the potential conflictive relationship or tension which may exist between representation and legitimacy with regard to

Exploring partners' perspectives on participation in heart failure home care: a mixed-method design.

Science.gov (United States)

Näsström, Lena; Luttik, Marie Louise; Idvall, Ewa; Strömberg, Anna

2017-05-01

To describe the partners' perspectives on participation in the care for patients with heart failure receiving home care. Partners are often involved in care of patients with heart failure and have an important role in improving patients' well-being and self-care. Partners have described both negative and positive experiences of involvement, but knowledge of how partners of patients with heart failure view participation in care when the patient receives home care is lacking. A convergent parallel mixed-method design was used, including data from interviews and questionnaires. A purposeful sample of 15 partners was used. Data collection lasted between February 2010 - December 2011. Interviews were analysed with content analysis and data from questionnaires (participation, caregiving, health-related quality of life, depressive symptoms) were analysed statistically. Finally, results were merged, interpreted and labelled as comparable and convergent or as being inconsistent. Partners were satisfied with most aspects of participation, information and contact. Qualitative findings revealed four different aspects of participation: adapting to the caring needs and illness trajectory, coping with caregiving demands, interacting with healthcare providers and need for knowledge to comprehend the health situation. Results showed confirmatory results that were convergent and expanded knowledge that gave a broader understanding of partner participation in this context. The results revealed different levels of partner participation. Heart failure home care included good opportunities for both participation and contact during home visits, necessary to meet partners' ongoing need for information to comprehend the situation. © 2016 John Wiley & Sons Ltd.

Understanding male cancer patients' barriers to participating in cancer rehabilitation

DEFF Research Database (Denmark)

Handberg, Charlotte; Lomborg, Kirsten; Nielsen, Claus Vinther

2015-01-01

The aim was to describe male cancer survivors' barriers towards participation in cancer rehabilitation as a means to guiding future targeted men's cancer rehabilitation. Symbolic Interactionism along with the interpretive descriptive methodology guided the study of 35 male cancer survivors...

Patient participation in ERS guidelines and research projects: the EMBARC experience.

Science.gov (United States)

Chalmers, James D; Timothy, Alan; Polverino, Eva; Almagro, Marta; Ruddy, Thomas; Powell, Pippa; Boyd, Jeanette

2017-09-01

The European Multicentre Bronchiectasis Audit and Research Collaboration (EMBARC) is a European Respiratory Society (ERS) Clinical Research Collaboration dedicated to improving research and clinical care for people with bronchiectasis. EMBARC has created a European Bronchiectasis Registry, funded by the ERS and by the European Union (EU) Innovative Medicines Initiative Programme. From the outset, EMBARC had the ambition to be a patient-focussed project. In contrast to many respiratory diseases, however, there are no specific patient charities or European patient organisations for patients with bronchiectasis and no existing infrastructure for patient engagement. This article describes the experience of EMBARC and the European Lung Foundation in establishing a patient advisory group and then engaging this group in European guidelines, an international registry and a series of research studies. Patient involvement in research, clinical guidelines and educational activities is increasingly advocated and increasingly important. Genuine patient engagement can achieve a number of goals that are critical to the success of an EU project, including focussing activities on patient priorities, allowing patients to direct the clinical and research agenda, and dissemination of guidelines and research findings to patients and the general public. Here, we review lessons learned and provide guidance for future ERS task forces, EU-funded projects or clinical research collaborations that are considering patient involvement. To understand the different ways in which patients can contribute to clinical guidelines, research projects and educational activities.To understand the barriers and potential solutions to these barriers from a physician's perspective, in order to ensure meaningful patient involvement in clinical projects.To understand the barriers and potential solutions from a patient's perspective, in order to meaningfully involve patients in clinical projects.

Quality of doctor-patient communication through the eyes of the patient: variation according to the patient's educational level.

Science.gov (United States)

Aelbrecht, Karolien; Rimondini, Michela; Bensing, Jozien; Moretti, Francesca; Willems, Sara; Mazzi, Mariangela; Fletcher, Ian; Deveugele, Myriam

2015-10-01

Good doctor-patient communication may lead to better compliance, higher patient satisfaction, and finally, better health. Although the social variance in how physicians and patients communicate is clearly demonstrated, little is known about what patients with different educational attainments actually prefer in doctor-patient communication. In this study we describe patients' perspective in doctor-patient communication according to their educational level, and to what extent these perspectives lean towards the expert opinion on doctor-patient communication. In a multi-center study (Belgium, The Netherlands, UK and Italy), focus group discussions were organised using videotaped medical consultations. A mixed methods approach was used to analyse the data. Firstly, a difference in perspective in communication style was found between the lower educated participants versus the middle and higher educated participants. Secondly, lower educated participants referred positively most to aspects related to the affective/emotional area of the medical consultation, followed by the task-oriented/problem-focused area. Middle and higher educated participants positively referred most to the task-oriented/problem-focused area. The competency of the physician was an important category of communication for all participants, independent of social background. The results indicate that the preferences of lower educated participants lean more towards the expert opinion in doctor-patient communication than the middle and higher educated participants. Patients' educational level seems to influence their perspective on communication style and should be taken into account by physicians. Further quantitative research is needed to confirm these results.

Patients suffering from rheumatic disease describing own experiences from participating in Basic Body Awareness Group Therapy: A qualitative pilot study.

Science.gov (United States)

Olsen, Aarid Liland; Skjaerven, Liv Helvik

2016-01-01

Rheumatic diseases have physical and psychological impact on patients' movement and function. Basic Body Awareness Therapy focuses on promoting more functional movement quality in daily life. The purpose of this study was to describe patient experiences from participating in Basic Body Awareness Group Therapy for inpatients with rheumatic disease. A phenomenological design included data collection in two focus group interviews with seven patients. Giorgi's four-step phenomenological method was used for data analysis. Four main themes emerged: (1) "Movement exploration-being guided in movement" described informants' exploration of bodily signals and movement habits; (2) "Movement awareness training in a relational perspective" informants described experiences from being in a group setting; (3) "Movement awareness-integration and insight" described informants' reflections on movement experiences; and (4) "Integrating and practicing new movement habits" informants described how they used their movement experiences in daily life. The study described perspectives in movement learning experienced by patients. The results support the view that contact with the body can help patients exploring and cultivating their own resources for a more functional movement quality. Descriptions of relational movement learning aspects can contribute to our understanding of physiotherapy group design.

Social and psychological determinants of participation in internet-based cancer support groups

DEFF Research Database (Denmark)

Høybye, Mette Terp; Dalton, Susanne Oksbjerg; Christensen, Jane

2010-01-01

PURPOSE: In this study, we identified the social and psychological characteristics of Danish cancer patients that determine use of the internet for support. MATERIALS AND METHODS: We invited 230 cancer patients taking part in a public rehabilitation program to participate in an internet module...... observed no difference between the two groups in quality of life or psychological well-being, while coping to some extent seemed related to participation in internet support groups. CONCLUSION: This study adds to the discussion on social inequality in internet use by cancer patients, showing that patients...... comprising training in the retrieval of cancer-related information from the internet and self-support groups. Persons who were motivated to join the internet groups (N = 100; 47%) were compared with persons who chose not to participate (N = 111) on the basis of self-reported baseline questionnaire data...

Barriers to participation in a phase II cardiac rehabilitation programme.

Science.gov (United States)

Mak, Y M W; Chan, W K; Yue, C S S

2005-12-01

To identify barriers to participation in a phase II cardiac rehabilitation programme and measures that may enhance participation. Prospective study. Regional hospital, Hong Kong. Cardiac patients recruited for a phase I cardiac rehabilitation programme from July 2002 to January 2003. Reasons for not participating in a phase II cardiac rehabilitation programme. Of the 193 patients recruited for a phase I cardiac rehabilitation programme, 152 (79%) patients, with a mean age of 70.3 years (standard deviation, 11.9 years), did not proceed to phase II programme. Eleven (7%) deaths occurred before commencement of phase II and 74 (49%) patients were considered physically unfit. Reasons for the latter included fractures, pain, or degenerative changes in the lower limbs (24%), and co-morbidities such as cerebrovascular accident (19%), chronic renal failure (11%), congestive heart failure (9%), and unstable angina (8%). Phase II rehabilitation was postponed until after completion of scheduled cardiac interventions in 13% of patients. Failure of physicians to arrange the pre-phase II exercise stress test as per protocol was reported in 7% of patients. Other reasons were reported: work or time conflicts (16%), non-compliance with cardiac treatment (5%), financial constraints (4%), self-exercise (3%), fear after exercise stress testing (3%), and patients returning to their original cardiologists for treatment (3%). A significant (79%) proportion of patients did not proceed to a phase II cardiac rehabilitation programme for a variety of reasons. These included physical unfitness, work or time conflicts, and need to attend scheduled cardiac interventions. Further studies are required to determine how to overcome obstacles to cardiac rehabilitation.

How should realism and hope be combined in physician-patient communication at the end of life? An online focus-group study among participants with and without a Muslim background.

Science.gov (United States)

Oosterveld-Vlug, Mariska G; Francke, Anneke L; Pasman, H Roeline W; Onwuteaka-Philipsen, Bregje D

2017-06-01

Maintaining false hope may result in prolonged curative aggressive treatments until the very last stage of life. In this study, we sought to explore how people think that realistic and hopeful information should best be combined in physician-patient communications at the end of life. During a period of 15 days, participants of five online focus groups (OFGs) could log in onto a closed discussion site and offer responses to several topics. A variety of people participated: patients, older people, relatives, and healthcare professionals with and without a Muslim background. Participants with a Muslim background constituted a separate group, because previous research indicated that they might have distinct views on good end-of-life care and communication. Transcripts were analyzed following the principles of thematic analysis. Participants from all focus groups preferred that physicians provide realistic information in an empathic way, stating that the patient would never be left on his own and that withholding curative treatment was not equal to withholding care, explicitly asking how the patient could be helped during the time remaining, and involving other professionals in the care process and communications. As such, physicians could support patients' transition from "hope for a cure" to "hope for a good death." Muslims specified the way they wished to receive realistic information: first from a relative, and not by using the term "incurable illness," but rather by informing the patient that they had no remaining curative treatments available. Realism and hope are not necessarily mutually exclusive and can be combined when providing realistic information in a delicate and culturally sensitive way. This study provides suggestions on how physicians can do so. Communication skills training as well as anchoring knowledge of the diversity of cultural and religious views into physicians' education could improve end-of-life communication.

On-ward participation of a hospital pharmacist in a Dutch intensive care unit reduces prescribing errors and related patient harm: an intervention study

NARCIS (Netherlands)

Klopotowska, J.E.; Kuiper, R.; van Kan, H.J.; de Pont, A.C.; Dijkgraaf, M.G.; Lie-A-Huen, L.; Vroom, M.B.; Smorenburg, S.M.

2010-01-01

Introduction: Patients admitted to an intensive care unit (ICU) are at high risk for prescribing errors and related adverse drug events (ADEs). An effective intervention to decrease this risk, based on studies conducted mainly in North America, is on-ward participation of a clinical pharmacist in an

Patient-centred performance monitoring systems and multi-agency care provision: a case study using a stakeholder participative approach.

Science.gov (United States)

Connell, N A; Goddard, A R; Philp, I; Bray, J

1998-05-01

We describe the processes involved in the development of an information system which can assess how care given by a number of agencies could be monitored by those agencies. In particular, it addresses the problem of sharing information as the boundaries of each agency are crossed. It focuses on the care of one specific patient group--the rehabilitation of elderly patients in the community, which provided an ideal multi-agency setting. It also describes: how a stakeholder participative approach to information system development was undertaken, based in part on the Soft Systems Methodology (SSM) approach (Checkland, 1981, 1990); some of the difficulties encountered in using such an approach; and the ways in which these were addressed. The paper goes on to describe an assessment tool called SCARS (the Southampton Community Ability Rating Scale). It concludes by reflecting on the management lessons arising from this project. It also observes, inter alia, how stakeholders have a strong preference for simpler, non-IT based systems, and comments on the difficulties encountered by stakeholders in attempting to reconcile their perceptions of the needs of their discipline or specialty with a more patient-centred approach of an integrated system.

The analyst's participation in the analytic process.

Science.gov (United States)

Levine, H B

1994-08-01

The analyst's moment-to-moment participation in the analytic process is inevitably and simultaneously determined by at least three sets of considerations. These are: (1) the application of proper analytic technique; (2) the analyst's personally-motivated responses to the patient and/or the analysis; (3) the analyst's use of him or herself to actualise, via fantasy, feeling or action, some aspect of the patient's conflicts, fantasies or internal object relationships. This formulation has relevance to our view of actualisation and enactment in the analytic process and to our understanding of a series of related issues that are fundamental to our theory of technique. These include the dialectical relationships that exist between insight and action, interpretation and suggestion, empathy and countertransference, and abstinence and gratification. In raising these issues, I do not seek to encourage or endorse wild analysis, the attempt to supply patients with 'corrective emotional experiences' or a rationalisation for acting out one's countertransferences. Rather, it is my hope that if we can better appreciate and describe these important dimensions of the analytic encounter, we can be better prepared to recognise, understand and interpret the continual streams of actualisation and enactment that are embedded in the analytic process. A deeper appreciation of the nature of the analyst's participation in the analytic process and the dimensions of the analytic process to which that participation gives rise may offer us a limited, although important, safeguard against analytic impasse.

High hospital research participation and improved colorectal cancer survival outcomes: a population-based study.

Science.gov (United States)

Downing, Amy; Morris, Eva Ja; Corrigan, Neil; Sebag-Montefiore, David; Finan, Paul J; Thomas, James D; Chapman, Michael; Hamilton, Russell; Campbell, Helen; Cameron, David; Kaplan, Richard; Parmar, Mahesh; Stephens, Richard; Seymour, Matt; Gregory, Walter; Selby, Peter

2017-01-01

In 2001, the National Institute for Health Research Cancer Research Network (NCRN) was established, leading to a rapid increase in clinical research activity across the English NHS. Using colorectal cancer (CRC) as an example, we test the hypothesis that high, sustained hospital-level participation in interventional clinical trials improves outcomes for all patients with CRC managed in those research-intensive hospitals. Data for patients diagnosed with CRC in England in 2001-2008 (n=209 968) were linked with data on accrual to NCRN CRC studies (n=30 998). Hospital Trusts were categorised by the proportion of patients accrued to interventional studies annually. Multivariable models investigated the relationship between 30-day postoperative mortality and 5-year survival and the level and duration of study participation. Most of the Trusts achieving high participation were district general hospitals and the effects were not limited to cancer 'centres of excellence', although such centres do make substantial contributions. Patients treated in Trusts with high research participation (≥16%) in their year of diagnosis had lower postoperative mortality (presearch participation, with a reduction in postoperative mortality of 1.5% (6.5%-5%, pstudies for all patients with CRC treated in the hospital study participants. Improvement precedes and increases with the level and years of sustained participation. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.

Measuring participation in patients with chronic back pain-the 5-Item Pain Disability Index.

Science.gov (United States)

McKillop, Ashley B; Carroll, Linda J; Dick, Bruce D; Battié, Michele C

2018-02-01

Of the three broad outcome domains of body functions and structures, activities, and participation (eg, engaging in valued social roles) outlined in the World Health Organization's (WHO) International Classification of Functioning, Disability and Health (ICF), it has been argued that participation is the most important to individuals, particularly those with chronic health problems. Yet, participation is not commonly measured in back pain research. The aim of this study was to investigate the construct validity of a modified 5-Item Pain Disability Index (PDI) score as a measure of participation in people with chronic back pain. A validation study was conducted using cross-sectional data. Participants with chronic back pain were recruited from a multidisciplinary pain center in Alberta, Canada. The outcome measure of interest is the 5-Item PDI. Each study participant was given a questionnaire package containing measures of participation, resilience, anxiety and depression, pain intensity, and pain-related disability, in addition to the PDI. The first five items of the PDI deal with social roles involving family responsibilities, recreation, social activities with friends, work, and sexual behavior, and comprised the 5-Item PDI seeking to measure participation. The last two items of the PDI deal with self-care and life support functions and were excluded. Construct validity of the 5-Item PDI as a measure of participation was examined using Pearson correlations or point-biserial correlations to test each hypothesized association. Participants were 70 people with chronic back pain and a mean age of 48.1 years. Forty-four (62.9%) were women. As hypothesized, the 5-Item PDI was associated with all measures of participation, including the Participation Assessment with Recombined Tools-Objective (r=-0.61), Late-Life Function and Disability Instrument: Disability Component (frequency: r=-0.66; limitation: r=-0.65), Work and Social Adjustment Scale (r=0.85), a global

Burn patients' return to daily activities and participation as defined by the International Classification of Functioning, Disability and Health: A systematic review.

Science.gov (United States)

Osborne, Candice L; Meyer, Walter J; Ottenbacher, Kenneth J; Arcari, Christine M

2017-06-01

The World Health Organization's International Classification of Functioning, Disability and Health (ICF) is a universal classification system of health and health-related domains. The ICF has been successfully applied to a wide range of health conditions and diseases; however, its application in the field of burn recovery has been minimal. This systematic review uses the domains of the ICF component 'activities and participation' to explore: (1) the extent to which return to daily activities and community participation after burn has been examined in the pediatric population, (2) the most common assessments used to determine activity and participation outcomes, and (3) what activity and participation areas are most affected in the pediatric burn population after discharge from acute care. Results determined that it is difficult to draw overarching conclusions in the area of return to 'activities and participation' for children with burn based on the paucity of current evidence. Of the studies conducted, few examined the same subtopics or used similar measurements. This suggests a need for more robust studies in this area in order to inform and improve burn rehabilitation practices to meet the potential needs of burn patients beyond an acute care setting. Copyright © 2016 Elsevier Ltd and ISBI. All rights reserved.

On-ward participation of a hospital pharmacist in a Dutch intensive care unit reduces prescribing errors and related patient harm: an intervention study

NARCIS (Netherlands)

Klopotowska, Joanna E.; Kuiper, Rob; van Kan, Hendrikus J.; de Pont, Anne-Cornelie; Dijkgraaf, Marcel G.; Lie-A-Huen, Loraine; Vroom, Margreeth B.; Smorenburg, Susanne M.

2010-01-01

Patients admitted to an intensive care unit (ICU) are at high risk for prescribing errors and related adverse drug events (ADEs). An effective intervention to decrease this risk, based on studies conducted mainly in North America, is on-ward participation of a clinical pharmacist in an ICU team. As

Understanding hospital meal experiences by means of participant-driven-photo-elicitation.

Science.gov (United States)

Justesen, Lise; Mikkelsen, Bent E; Gyimóthy, Szilvia

2014-04-01

A patients' hospital meal experiences can be complex and often difficult to capture using traditional methods. This study investigated patients' hospital meal experiences using participant-driven-photo-elicitation (PDPE). PDPE invites respondents to photograph their daily lives and combines this with interviews, which can provide deeper insight into multisensory experiences beyond verbal or written discourse. The sample consisted of eight hospitalised patients. Patients completed a photo-essay of their hospital meal experience during a single day at a Danish hospital and afterwards participated in an open-ended interview. Two inductive analytical approaches were selected to assess the patients' reflections on their hospital meal experiences. First, the interview transcripts were analysed using the Semiotic Analysis approach using qualitative data analysis software NVivo 9. Second, the 91 produced photographs and the participants' engagement with the photographs were analysed by means of a Reflexive Content Analysis. The study found that PDPE is a research method that can be used for expanding the conceptualisation of hospital meal experiences, revealing the significance of the meal context, materiality and memories beyond food per se. Copyright © 2013 Elsevier Ltd. All rights reserved.

Sequence analysis to assess labour market participation following vocational rehabilitation an observational study among patients sick-listed with low back pain from a randomised clinical trial in Denmark

DEFF Research Database (Denmark)

Lindholdt, Louise; Labriola, Merete; Nielsen, Claus Vinther

2017-01-01

INTRODUCTION: The return-to-work (RTW) process after long-term sickness absence is often complex and long and implies multiple shifts between different labour market states for the absentee. Standard methods for examining RTW research typically rely on the analysis of one outcome measure at a time...... (LBP). METHODS: The study population consisted of 160 patients randomly allocated to either a hospital-based brief or a multidisciplinary intervention. Data on labour market participation following intervention were obtained from a national register and analysed in two ways: as a binary outcome...... expressed as active or passive relief at a 1-year follow-up and as four different categories for labour market participation. Logistic regression and sequence analysis were performed. RESULTS: The logistic regression analysis showed no difference in labour market participation for patients in the two groups...

Participation and social participation: are they distinct concepts?

Science.gov (United States)

Piškur, Barbara; Daniëls, Ramon; Jongmans, Marian J; Ketelaar, Marjolijn; Smeets, Rob J E M; Norton, Meghan; Beurskens, Anna J H M

2014-03-01

The concept of participation has been extensively used in health and social care literature since the World Health Organization introduced its description in the International Classification of Functioning, Disability and Health (ICF) in 2001. More recently, the concept of social participation is frequently used in research articles and policy reports. However, in the ICF, no specific definition exists for social participation, and an explanation of differences between the concepts is not available. The central question in this discussion article is whether participation, as defined by the ICF, and social participation are distinct concepts. This article illustrates the concepts of participation and social participation, presents a critical discussion of their definitions, followed by implications for rehabilitation and possible future directions. A clear definition for participation or social participation does not yet exist. Definitions for social participation differ from each other and are not sufficiently distinct from the ICF definition of participation. Although the ICF is regarded an important conceptual framework, it is criticised for not being comprehensive. The relevance of societal involvement of clients is evident for rehabilitation, but the current ICF definition of participation does not sufficiently capture societal involvement. Changing the ICF's definition of participation towards social roles would overcome a number of its shortcomings. Societal involvement would then be understood in the light of social roles. Consequently, there would be no need to make a distinction between social participation and participation.

Sports participation and quality of life in adolescents and young adults with congenital heart disease.

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Dean, Peter N; Gillespie, Catherine W; Greene, Elizabeth Anne; Pearson, Gail D; Robb, Adelaide S; Berul, Charles I; Kaltman, Jonathan R

2015-01-01

Adolescents and young adults with congenital heart disease (CHD) are often restricted from physical activity and sports participation, which may have adverse effects. To determine the amount of physical activity, type of sports participation, and reasons for sports restrictions, and to evaluate the effect of sports participation on quality of life (QoL) in a cohort of patients with CHD. Individuals with CHD aged 13-30 years were recruited at outpatient visits or via mailings. They completed a questionnaire addressing physical activity, sports participation, sports restrictions, and QoL (Pediatric Quality of Life Inventory). We also reviewed the patient's medical record. Of the 177 patients who responded (mean age 20 years), 31% have mild CHD, 40% have moderate CHD, and 29% have severe CHD. In the cohort, 52% participate in competitive sports, 25% recreational sports, and 23% no sports. Among patients with severe CHD, 29% participate in competitive sports that would be restricted by published guidelines (36th Bethesda Conference). After controlling for age, sex, CHD severity, residual hemodynamic disease, and comorbidities, participation in competitive sports and increased frequency of physical activity are independently associated with a higher QoL (P = .003 and P = .001, respectively). In an identical model, competitive sports participation and frequency of physical activity are associated with higher maximum predicted oxygen consumption (VO2 ) (n = 40; P = .002 and .02) and slightly lower body mass index (BMI) (P = .02 and .01). All findings were similar when analyses were stratified by recruitment method. Patients with CHD commonly participate in competitive sports, and such participation is associated with higher QoL, improved exercise capacity, and lower BMI. © 2014 Wiley Periodicals, Inc.

Evaluation of participant recruitment methods to a rare disease online registry.

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Johnson, Kimberly J; Mueller, Nancy L; Williams, Katherine; Gutmann, David H

2014-07-01

Internet communication advances provide new opportunities to assemble individuals with rare diseases to online patient registries from wide geographic areas for research. However, there is little published information on the efficacy of different recruitment methods. Here we describe recruitment patterns and the characteristics of individuals with the self-identified autosomal dominant genetic disorder neurofibromatosis type 1 (NF1) who participated in an online patient registry during the 1-year period from 1/1/2012 to 12/31/2012. We employed four main mechanisms to alert potential participants to the registry: (1) Facebook and Google advertising, (2) government and academic websites, (3) patient advocacy groups, and (4) healthcare providers. Participants reported how they first heard about the registry through an online questionnaire. During the 1-year period, 880 individuals participated in the registry from all 50 U.S. States, the District of Columbia, Puerto Rico, and 39 countries. Facebook and Google were reported as referral sources by the highest number of participants (n=550, 72% Facebook), followed by healthcare providers (n=74), and government and academic websites (n=71). The mean participant age was 29±18 years and most participants reported White race (73%) and female sex (62%) irrespective of reported referral source. Internet advertising, especially through Facebook, resulted in efficient enrollment of large numbers of individuals with NF1. Our study demonstrates the potential utility of this approach to assemble individuals with a rare disease from across the world for research studies. © 2014 Wiley Periodicals, Inc.

Impact of Provider Participation in ACO Programs on Preventive Care Services, Patient Experiences, and Health Care Expenditures in US Adults Aged 18-64.

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Hong, Young-Rock; Sonawane, Kalyani; Larson, Samantha; Mainous, Arch G; Marlow, Nicole M

2018-05-15

Little is known about the impact of accountable care organization (ACO) on US adults aged 18-64. To examine whether having a usual source of care (USC) provider participating in an ACO affects receipt of preventive care services, patient experiences, and health care expenditures among nonelderly Americans. A cross-sectional analysis of the 2015 Medical Organizations Survey linked with the Medical Expenditure Panel Survey. Survey respondents aged 18-64 with an identified USC and continuous health insurance coverage during 2015. Preventative care services (routine checkup, flu vaccination, and cancer screening), patient experiences with health care (access to care, interaction quality with providers, and global satisfaction), and health care expenditures (total and out-of-pocket expenditures) for respondents with USC by ACO and non-ACO provider groups. Among 1563, nonelderly Americans having a USC, we found that nearly 62.7% [95% confidence interval (CI), 58.6%-66.7%; representing 15,722,208 Americans] were cared for by ACO providers. Our analysis showed no significant differences in preventive care services or patient experiences between ACO and non-ACO groups. Adjusted mean total health expenditures were slightly higher for the ACO than non-ACO group [$7016 (95% CI, $4949-$9914) vs. $6796 (95% CI, $4724-$9892)]; however, this difference was not statistically significant (P=0.250). Our findings suggest that having a USC provider participating in an ACO is not associated with preventive care services use, patient experiences, or health care expenditures among a nonelderly population.

Accounting for the sedative and analgesic effects of medication changes during patient participation in clinical research studies: measurement development and application to a sample of institutionalized geriatric patients.

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Sloane, Philip; Ivey, Jena; Roth, Mary; Roederer, Mary; Williams, Christianna S

2008-03-01

To date, no system has been published that allows investigators to adjust for the overall sedative and/or analgesic effects of medications, or changes in medications, in clinical trial participants for whom medication use cannot be controlled. This is common in clinical trials of behavioral and complementary/alternative therapies, and in research involving elderly or chronically ill patients for whom ongoing medical care continues during the trial. This paper describes the development, and illustrates the use, of a method we developed to address this issue, in which we generate single continuous variables to represent the daily sedative and analgesic loads of multiple medications. Medications for 90 study participants in a clinical trial of a nonpharmacological intervention were abstracted from medication administration records across multiple treatment periods. An expert panel of three academic clinical pharmacists and a geriatrician met to develop a system by which each study medication could be assigned a sedative and analgesic effect rating. The two measures, when applied to data on 90 institutionalized persons with Alzheimer's disease, resulted in variables with moderately skewed distributions that are consistent with the clinical profile of analgesia and sedation use in long-term care populations. The average study participant received 1.89 analgesic medications per day and had a daily analgesic load of 2.96; the corresponding figures for sedation were 2.07 daily medications and an average daily load of 11.41. A system of classifying the sedative and analgesic effects of non-study medications was created that divides drugs into categories based on the strength of their effects and assigns a rating to express overall sedative and analgesic effects. These variables may be useful in comparing patients and populations, and to control for drug effects in future studies.

[Student patient relationship from the patient's point of view].

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Beca, Juan Pablo; Browne, Francisca; Valdebenito, Carolina; Bataszew, Alexander; Martínez, María José

2006-08-01

Patients are becoming increasingly active in their relationship with medical professionals. Their relationship with medical students needing to learn clinical skills, may be specially problematic if patients are not willing to accept their involvement in the medical team. To examine patient's perceptions of their relation with medical students and their agreement to let students be part of the treating team. Qualitative study using taped semi-structured interviews addressed to inpatients from one public and one private hospital in Chile. Both groups of patients acknowledged that students dedicated more time to them, but they expressed their preference to limit student's participation to clinical history taking and physical examination. They also expected them to be observers rather than actors. Patients from the private hospital emphasized that only one student per instructor should participate in their care. Patients from the public hospital were more compliant about student's participation. The right to refuse students' involvement in their care was clearly known by all patients from the private system and by most patients from the public hospital. Patients in Chilean public and private hospitals were in general positive regarding student's participation in their care. Students' clinical practice ought to strictly respect patients's rights, and patients should be considered volunteers who generously agree to cooperate with the education of medical students.

Participants' perceptions and understanding of a malaria clinical trial in Bangladesh.

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Das, Debashish; Cheah, Phaik Yeong; Akter, Fateha; Paul, Dulal; Islam, Akhterul; Sayeed, Abdullah A; Samad, Rasheda; Rahman, Ridwanur; Hossain, Amir; Dondorp, Arjen; Day, Nicholas P; White, Nicholas J; Hasan, Mahtabuddin; Ghose, Aniruddha; Ashley, Elizabeth A; Faiz, Abul

2014-06-04

Existing evidence suggests that there is often limited understanding among participants in clinical trials about the informed consent process, resulting in their providing consent without really understanding the purpose of the study, specific procedures, and their rights. The objective of the study was to determine the subjects' understanding of research, perceptions of voluntariness and motivations for participation in a malaria clinical trial. In this study semi-structured interviews of adult clinical trial participants with uncomplicated falciparum malaria were conducted in Ramu Upazila Health Complex, in Bangladesh. Of 16 participants, the vast majority (81%) were illiterate. All subjects had a 'therapeutic misconception' i.e. the trial was perceived to be conducted primarily for the benefit of individual patients when in fact the main objective was to provide information to inform public health policy. From the patients' perspective, getting well from their illness was their major concern. Poor actual understanding of trial specific procedures was reported despite participants' satisfaction with treatment and nursing care. There is frequently a degree of overlap between research and provision of clinical care in malaria research studies. Patients may be motivated to participate to research without a good understanding of the principal objectives of the study despite a lengthy consent process. The findings suggest that use of a standard consent form following the current ICH-GCP guidelines does not result in achieving fully informed consent and the process should be revised, simplified and adapted to individual trial settings.

Sequence analysis to assess labour market participation following vocational rehabilitation: an observational study among patients sick-listed with low back pain from a randomised clinical trial in Denmark.

Science.gov (United States)

Lindholdt, Louise; Labriola, Merete; Nielsen, Claus Vinther; Horsbøl, Trine Allerslev; Lund, Thomas

2017-07-20

The return-to-work (RTW) process after long-term sickness absence is often complex and long and implies multiple shifts between different labour market states for the absentee. Standard methods for examining RTW research typically rely on the analysis of one outcome measure at a time, which will not capture the many possible states and transitions the absentee can go through. The purpose of this study was to explore the potential added value of sequence analysis in supplement to standard regression analysis of a multidisciplinary RTW intervention among patients with low back pain (LBP). The study population consisted of 160 patients randomly allocated to either a hospital-based brief or a multidisciplinary intervention. Data on labour market participation following intervention were obtained from a national register and analysed in two ways: as a binary outcome expressed as active or passive relief at a 1-year follow-up and as four different categories for labour market participation. Logistic regression and sequence analysis were performed. The logistic regression analysis showed no difference in labour market participation for patients in the two groups after 1 year. Applying sequence analysis showed differences in subsequent labour market participation after 2 years after baseline in favour of the brief intervention group versus the multidisciplinary intervention group. The study indicated that sequence analysis could provide added analytical value as a supplement to traditional regression analysis in prospective studies of RTW among patients with LBP. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2017. All rights reserved. No commercial use is permitted unless otherwise expressly granted.

Effects of primary caregiver participation in vestibular rehabilitation for unilateral neglect patients with right hemispheric stroke: a randomized controlled trial

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Dai CY

2013-04-01

Full Text Available Chin-Ying Dai,1,2 Yu-Hui Huang,3,4 Li-Wei Chou,5,6 Shiao-Chi Wu,7 Ray-Yau Wang,8 Li-Chan Lin9 1School of Nursing, National Yang Ming University, Taipei, Taiwan; 2Department of Nursing, Central Taiwan University of Science and Technology, Taichung, Taiwan; 3Department of Physical Medicine and Rehabilitation, Chung Shan Medical University Hospital, Taichung, Taiwan; 4School of Medicine, Chung Shan Medical University, Taichung, Taiwan; 5Department of Physical Medicine and Rehabilitation, China Medical University Hospital, Taichung, Taiwan; 6School of Chinese Medicine, College of Chinese Medicine, China Medical University, Taichung, Taiwan; 7Institute of Health and Welfare Policy, National Yang-Ming University, Taipei, Taiwan; 8Department of Physical Therapy and Assistive Technology, National Yang-Ming University, Taipei, Taiwan; 9Institute of Clinical and Community Health Nursing, National Yang-Ming University, Taipei, Taiwan, Republic of China Introduction: The current study aims to investigate the effects of primary caregiver participation in vestibular rehabilitation (VR on improving the measures of neglect, activities of daily living (ADL, balance, and falls of unilateral neglect (UN patients. Methods: This study is a single-blind randomized controlled trial. Both experimental (n = 24 and control groups (n = 24 received conventional rehabilitation. The experimental group undertook VR for a month. During the first and second weeks, a registered nurse trained the experimental group in VR. The primary caregivers in the experimental group supervised and guided their patients in VR during the third and fourth weeks. The outcome measures were neglect, ADL, balance, and falls. Results: The two groups of UN patients showed a significant improvement in neglect, ADL, and balance over time. Based on the generalized estimating equations model, an interaction was observed between groups and times. Significant interactions were observed between the VR group

Factors Influencing Colorectal Cancer Screening Participation

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Antonio Z. Gimeno García

2012-01-01

Full Text Available Colorectal cancer (CRC is a major health problem worldwide. Although population-based CRC screening is strongly recommended in average-risk population, compliance rates are still far from the desirable rates. High levels of screening uptake are necessary for the success of any screening program. Therefore, the investigation of factors influencing participation is crucial prior to design and launches a population-based organized screening campaign. Several studies have identified screening behaviour factors related to potential participants, providers, or health care system. These influencing factors can also be classified in non-modifiable (i.e., demographic factors, education, health insurance, or income and modifiable factors (i.e., knowledge about CRC and screening, patient and provider attitudes or structural barriers for screening. Modifiable determinants are of great interest as they are plausible targets for interventions. Interventions at different levels (patient, providers or health care system have been tested across the studies with different results. This paper analyzes factors related to CRC screening behaviour and potential interventions designed to improve screening uptake.

Does resident participation influence otolaryngology-head and neck surgery morbidity and mortality?

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Abt, Nicholas B; Reh, Douglas D; Eisele, David W; Francis, Howard W; Gourin, Christine G

2016-10-01

Patients may perceive resident procedural participation as detrimental to their outcome. Our objective is to investigate whether otolaryngology-head and neck surgery (OHNS) housestaff participation is associated with surgical morbidity and mortality. Case-control study. OHNS patients were analyzed from the American College of Surgeons National Surgical Quality Improvement Program 2006 to 2013 databases. We compared the incidence of 30-day postoperative morbidity, mortality, readmissions, and reoperations in patients operated on by resident surgeons with attending supervision (AR) with patients operated on by an attending surgeon alone (AO) using cross-tabulations and multivariable regression. There were 27,018 cases with primary surgeon data available, with 9,511 AR cases and 17,507 AO cases. Overall, 3.62% of patients experienced at least one postoperative complication. The AR cohort had a higher complication rate of 5.73% than the AO cohort at 2.48% (P < .001). After controlling for all other variables, there was no significant difference in morbidity (odds ratio [OR] = 1.05 [0.89 to 1.24]), mortality (OR = 0.91 [0.49 to 1.70]), readmission (OR = 1.29 [0.92 to 1.81]), or reoperation (OR = 1.28 [0.91 to 1.80]) for AR compared to AO cases. There was no difference between postgraduate year levels for adjusted 30-day morbidity or mortality. There is an increased incidence of morbidity, mortality, readmission, and reoperation in OHNS surgical cases with resident participation, which appears related to increased comorbidity with AR patients. After controlling for other variables, resident participation was not associated with an increase in 30-day morbidity, mortality, readmission, or reoperation odds. These data suggest that OHNS resident participation in surgical cases is not associated with poorer short-term outcomes. 3b Laryngoscope, 126:2263-2269, 2016. © 2016 The American Laryngological, Rhinological and Otological Society, Inc.

Participation in medical decision-making across Europe: An international longitudinal multicenter study.

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Bär Deucher, A; Hengartner, M P; Kawohl, W; Konrad, J; Puschner, B; Clarke, E; Slade, M; Del Vecchio, V; Sampogna, G; Égerházi, A; Süveges, Á; Krogsgaard Bording, M; Munk-Jørgensen, P; Rössler, W

2016-05-01

The purpose of this paper was to examine national differences in the desire to participate in decision-making of people with severe mental illness in six European countries. The data was taken from a European longitudinal observational study (CEDAR; ISRCTN75841675). A sample of 514 patients with severe mental illness from the study centers in Ulm, Germany, London, England, Naples, Italy, Debrecen, Hungary, Aalborg, Denmark and Zurich, Switzerland were assessed as to desire to participate in medical decision-making. Associations between desire for participation in decision-making and center location were analyzed with generalized estimating equations. We found large cross-national differences in patients' desire to participate in decision-making, with the center explaining 47.2% of total variance in the desire for participation (Pparticipation, followed by Aalborg (mean=1.97), where scores were in turn significantly higher than in Debrecen (mean=1.56). The lowest scores were reported in Naples (mean=1.14). Over time, the desire for participation in decision-making increased significantly in Zurich (b=0.23) and decreased in Naples (b=-0.14). In all other centers, values remained stable. This study demonstrates that patients' desire for participation in decision-making varies by location. We suggest that more research attention be focused on identifying specific cultural and social factors in each country to further explain observed differences across Europe. Copyright © 2016 Elsevier Masson SAS. All rights reserved.

Palliative care team visits. Qualitative study through participant observation.

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Alfaya Góngora, Maria Del Mar; Bueno Pernias, Maria José; Hueso Montoro, César; Guardia Mancilla, Plácido; Montoya Juárez, Rafael; García Caro, Maria Paz

2016-03-30

To describe the clinical encounters that occur when a palliative care team provides patient care and the features that influence these encounters and indicate whether they are favorable or unfavorable depending on the expectations and feelings of the various participants. A qualitative case study conducted via participant observation. A total of 12 observations of the meetings of palliative care teams with patients and families in different settings (home, hospital and consultation room) were performed. The visits were follow-up or first visits, either scheduled or on demand. Content analysis of the observation was performed. The analysis showed the normal follow-up activity of the palliative care unit that was focused on controlling symptoms, sharing information and providing advice on therapeutic regimens and care. The environment appeared to condition the patients' expressions and the type of patient relationship. Favorable clinical encounter conditions included kindness and gratitude. Unfavorable conditions were deterioration caused by approaching death, unrealistic family objectives and limited resources. Home visits from basic palliative care teams play an important role in patient and family well-being. The visits seem to focus on controlling symptoms and are conditioned by available resources.

Specialist participation in healthcare delivery transformation: influence of patient self-referral.

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Aliu, Oluseyi; Sun, Gordon; Burke, James; Chung, Kevin C; Davis, Matthew M

2014-01-01

Improving coordination of care and containing healthcare costs are prominent goals of healthcare reform. Specialist involvement in healthcare delivery transformation efforts like Accountable Care Organizations (ACOs) is necessary to achieve these goals. However, patients’ self-referrals to specialists may undermine care coordination and incur unnecessary costs if patients frequently receive care from specialists not engaged in such healthcare delivery transformation efforts. Additionally, frequent self-referrals may also diminish the incentive for specialist participation in reform endeavors like ACOs to get access to a referral base. To examine recent national trends in self-referred new visits to specialists. A descriptive cross-sectional study of new ambulatory visits to specialists from 2000 to 2009 using data from the National Ambulatory Medical Care Survey. We calculated nationally representative estimates of the proportion of new specialist visits through self-referrals among Medicare and private insurance beneficiaries. We also estimated the nationally representative absolute number of self-referred new specialist visits among both groups of beneficiaries. Among Medicare and private insurance beneficiaries, self-referred visits declined from 32.2% (95% confidence interval [CI], 24.0%-40.4%) to 19.6% (95% CI, 13.9%-23.3%) and from 32.4% (95% CI, 27.9%-36.8%) to 24.1% (95% CI,18.8%-29.4%), respectively. Hence, at least 1 in 5 and 1 in 4 new visits to specialists among Medicare and private insurance beneficiaries, respectively, are self-referred. The current considerable rate of self-referred new specialist visits among both Medicare and private insurance beneficiaries may have adverse implications for organizations attempting to transform healthcare delivery with improved care coordination.

Design, and participant enrollment, of a randomized controlled trial evaluating effectiveness and cost-effectiveness of a community-based case management intervention, for patients suffering from COPD

DEFF Research Database (Denmark)

Sørensen, Sabrina Storgaard; Pedersen, Kjeld Møller; Weinreich, Ulla Møller

2015-01-01

Background: Case management interventions are recommended to improve quality of care and reduce costs in chronic care, but further evidence on effectiveness and cost-effectiveness is needed. The objective of this study is the reporting of the design and participant enrollment of a randomized...... controlled trial, conducted to evaluate the effectiveness and cost-effectiveness of a community-based case management model for patients suffering from chronic obstructive pulmonary disease (COPD). With a focus on support for self-care and care coordination, the intervention was hypothesized to result...... patients were randomized into two groups: the case-managed group and the usual-care group. Participant characteristics were obtained at baseline, and measures on effectiveness and costs were obtained through questionnaires and registries within a 12-month follow-up period. In the forthcoming analysis...

Policy statement—Boxing participation by children and adolescents.

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Purcell, Laura; LeBlanc, Claire M A

2011-09-01

Thousands of boys and girls younger than 19 years participate in boxing in North America. Although boxing provides benefits for participants, including exercise, self-discipline, and self-confidence, the sport of boxing encourages and rewards deliberate blows to the head and face. Participants in boxing are at risk of head, face, and neck injuries, including chronic and even fatal neurologic injuries. Concussions are one of the most common injuries that occur with boxing. Because of the risk of head and facial injuries, the American Academy of Pediatrics and the Canadian Paediatric Society oppose boxing as a sport for children and adolescents. These organizations recommend that physicians vigorously oppose boxing in youth and encourage patients to participate in alternative sports in which intentional head blows are not central to the sport.

The Oxford Participation and Activities Questionnaire: study protocol

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Morley D

2013-12-01

Full Text Available David Morley, Sarah Dummett, Laura Kelly, Jill Dawson, Ray Fitzpatrick, Crispin JenkinsonNuffield Department of Population Health, University of Oxford, Oxford, UKBackground: With an ageing population and increasing demands on health and social care services, there is growing importance attached to the management of long-term conditions, including maximizing the cost-effectiveness of treatments. In line with this, there is increasing emphasis on the need to keep people both active and participating in daily life. Consequently, it is essential that well developed and validated instruments that can meaningfully assess levels of participation and activity are widely available. Current measures, however, are largely focused on disability and rehabilitation, and there is no measure of activity or participation for generic use that fully meets the standards set by regulatory bodies such as the US Food and Drug Administration. Here we detail a protocol for the development and validation of a new patient-reported outcome measure (PROM for assessment of participation and activity in people experiencing a variety of health conditions, ie, the Oxford Participation and Activities Questionnaire (Ox-PAQ. The stages incorporated in its development are entirely in line with current regulations and represent best practice in the development of PROMs.Methods: Development of the Ox-PAQ is theoretically grounded in the World Health Organization International Classification of Functioning, Disability, and Health. The project incorporates a new strategy of engaging with stakeholders from the outset in an attempt to identify those characteristics of PROMs considered most important to a range of potential users. Items will be generated through interviews with patients from a range of conditions. Pretesting of the instrument will be via cognitive interviews and focus groups. A postal survey will be conducted, with data subject to factor and Rasch analysis in order to

[Social participation and activities of daily living of patients with inflammatory rheumatic diseases : support by self-help, exercise therapy and new media].

Science.gov (United States)

Mattukat, K; Thyrolf, A

2014-02-01

Rheumatic patients are at risk of social isolation and physical inactivity which can have a significant impact on physical and mental health. Only every seventh patient is organized in a self-help group (SHG), most of them in the German League Against Rheumatism (GLAR). Members of a SHG are socially and physically more active and take part in exercise therapy (ET) more often. Depending on the study, the utilization of ET ranges from 25 % to 71 %. The functional training as the most attended offer of the GLAR showed positive effects at the physical and psychological levels. To motivate difficult to reach patients to engage in self-help and regular exercise, further development of exercise programs with individually tailored intensive strength and endurance elements as well as the increased use of new media seems promising. The Internet provides various opportunities for networking and social participation especially for severely impaired and temporally less flexible patients.

76 FR 29773 - Call for Participation in Pillbox Patient-Safety Initiative

Science.gov (United States)

2011-05-23

... Pillbox Patient-Safety Initiative ACTION: Notice. SUMMARY: The National Library of Medicine (NLM) invites..., production version of Pillbox. This initiative is an important element of ongoing efforts to enhance patient.... SUPPLEMENTARY INFORMATION: NLM has established Pillbox, an initiative to enhance patient safety, by making...

Learning real-life cognitive abilities in a novel 360°-virtual reality supermarket: a neuropsychological study of healthy participants and patients with epilepsy.

Science.gov (United States)

Grewe, Philip; Kohsik, Agnes; Flentge, David; Dyck, Eugen; Botsch, Mario; Winter, York; Markowitsch, Hans J; Bien, Christian G; Piefke, Martina

2013-04-23

To increase the ecological validity of neuropsychological instruments the use of virtual reality (VR) applications can be considered as an effective tool in the field of cognitive neurorehabilitation. Despite the growing use of VR programs, only few studies have considered the application of everyday activities like shopping or travelling in VR training devices. We developed a novel 360°-VR supermarket, which is displayed on a circular arrangement of 8 touch-screens--the "OctaVis". In this setting, healthy human adults had to memorize an auditorily presented shopping list (list A) and subsequently buy all remembered products of this list in the VR supermarket. This procedure was accomplished on three consecutive days. On day four, a new shopping list (list B) was introduced and participants had to memorize and buy only products of this list. On day five, participants had to buy all remembered items of list A again, but without new presentation of list A. Additionally, we obtained measures of participants' presence, immersion and figural-spatial memory abilities. We also tested a sample of patients with focal epilepsy with an extended version of our shopping task, which consisted of eight days of training. We observed a comprehensive and stable effect of learning for the number of correct products, the required time for shopping, and the length of movement trajectories in the VR supermarket in the course of the training program. Task performance was significantly correlated with participants' figural-spatial memory abilities and subjective level of immersion into the VR. Learning effects in our paradigm extend beyond mere verbal learning of the shopping list as the data show evidence for multi-layered learning (at least visual-spatial, strategic, and verbal) on concordant measures. Importantly, learning also correlated with measures of figural-spatial memory and the degree of immersion into the VR. We propose that cognitive training with the VR supermarket program

Exploring mHealth Participation for Emergency Response Communities

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David G. Schwartz

2017-03-01

Full Text Available We explore the challenges of participation by members of emergency response communities who share a similar condition and treatment, and are called upon to participate in emergency events experienced by fellow members. Smartphones and location-based social networking technologies present an opportunity to re-engineer certain aspects of emergency medical response. Life-saving prescription medication extended in an emergency by one individual to another occurs on a micro level, anecdotally documented. We illustrate the issues and our approach through the example of an app to support patients prone to anaphylaxis and prescribed to carry epinephrine auto-injectors. We address unique participation challenges in an mHealth environment in which interventions are primarily short-term interactions which require clear and precise decision-making and constant tracking of potential participants in responding to an emergency medical event. The conflicting effects of diffused responsibility and shared identity are identified as key factors in modeling participation.

Looking for a more participative healthcare: sharing medical decision making

OpenAIRE

Bravo, Paulina; Escuela de Enfermería, Pontificia Universidad Católica de Chile, Chile. School of Medicine, Cardiff University. Reino Unido. Enfermera, doctora en Salud Pública.; Contreras, Aixa; Escuela de Enfermería, Pontificia Universidad Católica de Chile, Chile. enfermera matrona, magister en Psicología Social Comunitaria.; Perestelo-Pérez, Lilisbeth; Servicio de Evaluación del Servicio Canario de la Salud, Red de Investigación en Servicios de Salud en Enfermedades Crónicas (REDISSEC). España. psicóloga, doctora en Psicología Clínica y de la Salud.; Pérez-Ramos, Jeanette; Fundación Canaria de Investigación y Salud (FUNCIS). España. psicóloga.; Málaga, Germán; Conocimiento y Evidencia (CONEVID), Universidad Peruana Cayetano Heredia. Lima, Perú. médico internista, magister en Medicina.

2014-01-01

The healthcare model is shifting from a paternalistic towards a more inclusive and participative approach, such as shared decision making (SDM). SDM considers patients as autonomous and responsible agents. SDM is a therapeutic approach where healthcare providers and patients share the best evidence available to make a decision according to the values and preferences of the patient. Decision aids are tools that can facilitate this information exchange. These tools help patients to increase kno...

Validation of the Oxford Participation and Activities Questionnaire.

Science.gov (United States)

Morley, David; Dummett, Sarah; Kelly, Laura; Dawson, Jill; Fitzpatrick, Ray; Jenkinson, Crispin

2016-01-01

There is growing interest in the management of long-term conditions and in keeping people active and participating in the community. Testing the effectiveness of interventions that aim to affect activities and participation can be challenging without a well-developed, valid, and reliable instrument. This study therefore aims to develop a patient-reported outcome measure, the Oxford Participation and Activities Questionnaire (Ox-PAQ), which is theoretically grounded in the World Health Organization's International Classification of Functioning, Disability, and Health (ICF) and fully compliant with current best practice guidelines. Questionnaire items generated from patient interviews and based on the nine chapters of the ICF were administered by postal survey to 386 people with three neurological conditions: motor neuron disease, multiple sclerosis, and Parkinson's disease. Participants also completed the Medical Outcomes Study (MOS) 36-Item Short Form Health Survey (SF-36) and EQ-5D-5L. Thus, 334 participants completed the survey, a response rate of 86.5%. Factor analysis techniques identified three Ox-PAQ domains, consisting of 23 items, accounting for 72.8% of variance. Internal reliability for the three domains was high (Cronbach's α: 0.81-0.96), as was test-retest reliability (intraclass correlation: 0.83-0.92). Concurrent validity was demonstrated through highly significant relationships with relevant domains of the MOS SF-36 and the EQ- 5D-5L. Assessment of known-groups validity identified significant differences in Ox-PAQ scores among the three conditions included in the survey. Results suggest that the Ox-PAQ is a valid and reliable measure of participation and activity. The measure will now be validated in a range of further conditions, and additional properties, such as responsiveness, will also be assessed in the next phase of the instrument's development.

Once a clinician, always a clinician: a systematic review to develop a typology of clinician-researcher dual-role experiences in health research with patient-participants

Directory of Open Access Journals (Sweden)

E. Jean C. Hay-Smith

2016-08-01

Full Text Available Abstract Background Many health researchers are clinicians. Dual-role experiences are common for clinician-researchers in research involving patient-participants, even if not their own patients. To extend the existing body of literature on why dual-role is experienced, we aimed to develop a typology of common catalysts for dual-role experiences to help clinician-researchers plan and implement methodologically and ethically sound research. Methods Systematic searching of Medline, CINAHL, PsycINFO, Embase and Scopus (inception to 28.07.2014 for primary studies or first-person reflexive reports of clinician-researchers’ dual-role experiences, supplemented by reference list checking and Google Scholar scoping searches. Included articles were loaded in NVivo for analysis. The coding was focused on how dual-role was evidenced for the clinician-researchers in research involving patients. Procedures were completed by one researcher (MB and independently cross-checked by another (JHS. All authors contributed to extensive discussions to resolve all disagreements about initial coding and verify the final themes. Results Database searching located 7135 records, resulting in 29 included studies, with the addition of 7 studies through reference checks and scoping searches. Two overarching themes described the most common catalysts for dual-role experiences – ways a research role can involve patterns of behaviour typical of a clinical role, and the developing connection that starts to resemble a clinician-patient relationship. Five subthemes encapsulated the clinical patterns commonly repeated in research settings (clinical queries, perceived agenda, helping hands, uninvited clinical expert, and research or therapy and five subthemes described concerns about the researcher-participant relationship (clinical assumptions, suspicion and holding back, revelations, over-identification, and manipulation. Clinician-researchers use their clinical skills in health

Preferred and Perceived Participation of Younger and Older Patients in Decision Making About Treatment for Early Breast Cancer: A Prospective Study.

Science.gov (United States)

Hamelinck, Victoria C; Bastiaannet, Esther; Pieterse, Arwen H; van de Velde, Cornelis J H; Liefers, Gerrit-Jan; Stiggelbout, Anne M

2018-04-01

Older patients are believed to prefer a more passive role in treatment decision making, but studies reporting this relation were conducted over a decade ago or were retrospective. We prospectively compared younger (40-64 years) versus older (≥ 65 years) breast cancer patients' preferences for decision-making roles and their perceived actual roles. A prospective multicenter study was conducted in Leiden, The Hague, and Tilburg over a 2-year period. Early-stage breast cancer patients were surveyed about their preferred and perceived decision-making roles (active, shared, or passive) concerning surgery type (breast-conserving vs. mastectomy) (n = 74), adjuvant chemotherapy (aCT, n = 43), and adjuvant hormonal therapy (aHT, n = 39). For all decisions, both age groups most frequently preferred a shared role before consultation, except for decisions about aHT, for which younger patients more commonly preferred an active role. The proportion of patients favoring an active or passive role in each decision was lower for the older than the younger patients, but none of the differences was significant. Regarding perceived actual roles, both groups most frequently reported an active role in the surgical decision after consultation. In deciding about both aCT and aHT, a larger proportion of older patients perceived having had a passive role compared to younger patients, and a greater proportion of younger patients perceived having been active. Again, differences were not statistically significant. Most older patients preferred to decide together with their clinician, but preferences varied widely. Older patients more often than younger patients perceived they had not been involved in decisions about systemic therapy. Clinicians should invite all patients to participate in decision making and elicit their preferred role. Copyright © 2017 The Authors. Published by Elsevier Inc. All rights reserved.

Language, subjectivity and participation in psychiatric institutions in Denmark

DEFF Research Database (Denmark)

Ringer, Agnes

Although the field of health communication is growing, few studies of everyday communication between patients and professionals in the mental health sector have been conducted. This project studies the everyday interactions between multidisciplinary mental health professionals and patients at two...... for participation and involvement in psychiatry are negotiated for the patients? Finally, the project wishes to understand what the encounters with the professionals and the practices of the institution may mean for the patients’ self-understandings and subjectivity....

User Participation in Pilot Implementation

DEFF Research Database (Denmark)

Torkilsheyggi, Arnvør Martinsdóttir á; Hertzum, Morten

2014-01-01

Pilot implementations provide users with real-work experiences of how a system will affect their daily work before the design of the system is finalized. On the basis of a pilot implementation of a system for coordinating the transport of patients by hospital porters, we investigate pilot...... implementation as a method for participatory design. We find that to foster participation and learning about user needs a pilot implementation must create a space for reflecting on use, in addition to the space for using the pilot system. The space for reflection must also exist during the activities preparing...... the use of the pilot system because the porters and nurses learned about their needs throughout the pilot implementation, not just during use. Finally, we discuss how the scope and duration of a pilot implementation influence the conditions for participation....

Factors influencing participation in a vascular disease prevention lifestyle program among participants in a cluster randomized trial.

Science.gov (United States)

Laws, Rachel A; Fanaian, Mahnaz; Jayasinghe, Upali W; McKenzie, Suzanne; Passey, Megan; Davies, Gawaine Powell; Lyle, David; Harris, Mark F

2013-05-31

Previous research suggests that lifestyle intervention for the prevention of diabetes and cardiovascular disease (CVD) are effective, however little is known about factors affecting participation in such programs. This study aims to explore factors influencing levels of participation in a lifestyle modification program conducted as part of a cluster randomized controlled trial of CVD prevention in primary care. This concurrent mixed methods study used data from the intervention arm of a cluster RCT which recruited 30 practices through two rural and three urban primary care organizations. Practices were randomly allocated to intervention (n = 16) and control (n = 14) groups. In each practice up to 160 eligible patients aged between 40 and 64 years old, were invited to participate. Intervention practice staff were trained in lifestyle assessment and counseling and referred high risk patients to a lifestyle modification program (LMP) consisting of two individual and six group sessions over a nine month period. Data included a patient survey, clinical audit, practice survey on capacity for preventive care, referral and attendance records at the LMP and qualitative interviews with Intervention Officers facilitating the LMP. Multi-level logistic regression modelling was used to examine independent predictors of attendance at the LMP, supplemented with qualitative data from interviews with Intervention Officers facilitating the program. A total of 197 individuals were referred to the LMP (63% of those eligible). Over a third of patients (36.5%) referred to the LMP did not attend any sessions, with 59.4% attending at least half of the planned sessions. The only independent predictors of attendance at the program were employment status - not working (OR: 2.39 95% CI 1.15-4.94) and having high psychological distress (OR: 2.17 95% CI: 1.10-4.30). Qualitative data revealed that physical access to the program was a barrier, while GP/practice endorsement of the program and

Co-enrolment of Participants into Multiple Cancer Trials: Benefits and Challenges.

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Cafferty, F H; Coyle, C; Rowley, S; Berkman, L; MacKensie, M; Langley, R E

2017-07-01

Opportunities to enter patients into more than one clinical trial are not routinely considered in cancer research and experiences with co-enrolment are rarely reported. Potential benefits of allowing appropriate co-enrolment have been identified in other settings but there is a lack of evidence base or guidance to inform these decisions in oncology. Here, we discuss the benefits and challenges associated with co-enrolment based on experiences in the Add-Aspirin trial - a large, multicentre trial recruiting across a number of tumour types, where opportunities to co-enrol patients have been proactively explored and managed. The potential benefits of co-enrolment include: improving recruitment feasibility; increased opportunities for patients to participate in trials; and collection of robust data on combinations of interventions, which will ensure the ongoing relevance of individual trials and provide more cohesive evidence to guide the management of future patients. There are a number of perceived barriers to co-enrolment in terms of scientific, safety and ethical issues, which warrant consideration on a trial-by-trial basis. In many cases, any potential effect on the results of the trials will be negligible - limited by a number of factors, including the overlap in trial cohorts. Participant representatives stress the importance of autonomy to decide about trial enrolment, providing a compelling argument for offering co-enrolment where there are multiple trials that are relevant to a patient and no concerns regarding safety or the integrity of the trials. A number of measures are proposed for managing and monitoring co-enrolment. Ensuring acceptability to (potential) participants is paramount. Opportunities to enter patients into more than one cancer trial should be considered more routinely. Where planned and managed appropriately, co-enrolment can offer a number of benefits in terms of both scientific value and efficiency of study conduct, and will increase the

Effects of cortisol on the memory bias for emotional words? A study in patients with depression and healthy participants using the Directed Forgetting task.

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Kuehl, Linn K; Wolf, Oliver T; Driessen, Martin; Schlosser, Nicole; Fernando, Silvia Carvalho; Wingenfeld, Katja

2017-09-01

Mood congruent alterations in information processing such as an impaired memory bias for emotional information and impaired inhibitory functions are prominent features of a major depressive disorder (MDD). Furthermore, in MDD patients hypothalamic-pituitary-adrenal axis dysfunctions are frequently found. Impairing effects of stress or cortisol administration on memory retrieval as well as impairing stress effects on cognitive inhibition are well documented in healthy participants. In MDD patients, no effect of acute cortisol administration on memory retrieval was found. The current study investigated the effect of acute cortisol administration on memory bias in MDD patients (N = 55) and healthy controls (N = 63) using the Directed Forgetting (DF) task with positive, negative and neutral words in a placebo controlled, double blind design. After oral administration of 10 mg hydrocortisone/placebo, the item method of the DF task was conducted. Memory performance was tested with a free recall test. Cortisol was not found to have an effect on the results of the DF task. Interestingly, there was significant impact of valence: both groups showed the highest DF score for positive words and remembered significantly more positive words that were supposed to be remembered and significantly more negative words that were supposed to be forgotten. In general, healthy participants remembered more words than the depressed patients. Still, the depressed patients were able to inhibit intentionally irrelevant information at a comparable level as the healthy controls. These results demonstrate the importance to distinguish in experimental designs between different cognitive domains such as inhibition and memory in our study. Copyright © 2017 Elsevier Ltd. All rights reserved.

Participation in a National Lifestyle Change Program is associated with improved diabetes Control outcomes.

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Jackson, Sandra L; Staimez, Lisa R; Safo, Sandra; Long, Qi; Rhee, Mary K; Cunningham, Solveig A; Olson, Darin E; Tomolo, Anne M; Ramakrishnan, Usha; Narayan, Venkat K M; Phillips, Lawrence S

2017-09-01

Clinical trials show lifestyle change programs are beneficial, yet large-scale, successful translation of these programs is scarce. We investigated the association between participation in the largest U.S. lifestyle change program, MOVE!, and diabetes control outcomes. This longitudinal, retrospective cohort study used Veterans Health Administration databases of patients with diabetes who participated in MOVE! between 2005 and 2012, or met eligibility criteria (BMI ≥25kg/m 2 ) but did not participate. Main outcomes were diabetic eye disease, renal disease, and medication intensification. There were 400,170 eligible patients with diabetes, including 87,366 (22%) MOVE! Included patients were 96% male, 77% white, with mean age 58years and BMI 34kg/m 2 . Controlling for baseline measurements and age, race, sex, BMI, and antidiabetes medications, MOVE! participants had lower body weight (-0.6kg), random plasma glucose (-2.8mg/dL), and HbA1c (-0.1%) at 12months compared to nonparticipants (each plifestyle change programs in U.S. health systems may improve health among the growing patient population with diabetes. Published by Elsevier Inc.

Does participating in a clinical trial affect subsequent nursing management? Post-trial care for participants recruited to the INTACT pressure ulcer prevention trial: A follow-up study.

Science.gov (United States)

Webster, Joan; Bucknall, Tracey; Wallis, Marianne; McInnes, Elizabeth; Roberts, Shelley; Chaboyer, Wendy

2017-06-01

Participation in a clinical trial is believed to benefit patients but little is known about the post-trial effects on routine hospital-based care. To describe (1) hospital-based, pressure ulcer care-processes after patients were discharged from a pressure ulcer prevention, cluster randomised controlled trial; and (2) to investigate if the trial intervention had any impact on subsequent hospital-based care. We conducted a retrospective analysis of 133 trial participants who developed a pressure ulcer during the clinical trial. We compared outcomes and care processes between participants who received the pressure ulcer prevention intervention and those in the usual care, control group. We also compared care processes according to the pressure ulcer stage. A repositioning schedule was reported for 19 (14.3%) patients; 33 (24.8%) had a dressing applied to the pressure ulcer; 17 (12.8) patients were assessed by a wound care team; and 20 (15.0%) were seen by an occupational therapist. Patients in the trial's intervention group were more likely to have the presence of a pressure ulcer documented in their chart (odds ratio (OR) 8.18, 95% confidence intervals (CI) 3.64-18.36); to be referred to an occupational therapist OR 0.92 (95% CI 0.07; 0.54); to receive a pressure relieving device OR 0.31 (95% CI 0.14; 0.69); or a pressure relieving mattress OR 0.44 (95% CI 0.20; 0.96). Participants with Stage 2 or unstageable ulcers were more likely than others to have dressings applied to their wounds (p=pressure ulcer status and care is poor. Copyright © 2017 Elsevier Ltd. All rights reserved.

Does Participation in Sports Affect Osteoarthritic Progression After Periacetabular Osteotomy?

Science.gov (United States)

Hara, Daisuke; Hamai, Satoshi; Fukushi, Jun-Ichi; Kawaguchi, Ken-Ichi; Motomura, Goro; Ikemura, Satoshi; Komiyama, Keisuke; Nakashima, Yasuharu

2017-09-01

Periacetabular osteotomy (PAO) is an effective treatment for symptomatic acetabular dysplasia. However, whether postoperative participation in sports leads to progression of the Kellgren-Lawrence (KL) grade of osteoarthritis (OA) in these patients is unclear. To investigate (1) participation in sports before and after PAO and (2) whether postoperative participation in sports leads to progression of the KL grade. Case-control study; Level of evidence, 3. The authors retrospectively reviewed data on 161 patients (183 hips) who underwent PAO for symptomatic acetabular dysplasia with preoperative KL grade 1 or 2 between 1998 and 2011. The mean age at the time of surgery was 42.0 ± 10.9 years (range, 12-64 years), and the mean follow-up duration was 100 months (range, 13-180 months). Data included participation in sports, the University of California, Los Angeles (UCLA) activity scale score, age at the time of surgery, body mass index, follow-up duration, history of treatment for developmental hip dislocations, Merle d'Aubigné-Postel score, Oxford Hip Score, center-edge angle, and KL grade. Univariate and multivariate analyses were applied to determine which factors were associated with progression to KL grade 3 or 4 after PAO. The number of patients who participated in sports significantly increased from 50 (31.1%) preoperatively to 89 (55.3%) postoperatively. The mean UCLA score significantly increased from 4.7 ± 2.1 preoperatively to 5.5 ± 2.0 postoperatively. The KL grade progressed to grade 3 or 4 in 16 hips, including 4 hips that underwent conversion to total hip arthroplasty. No significant differences were found in postoperative participation in sports (89 hips [53.3%] vs 11 hips [68.8%], respectively; P = .24) and the UCLA score (5.6 ± 2.0 vs 5.1 ± 2.0, respectively; P = .30) between hips with KL grade 1 or 2 and KL grade 3 or 4. A multivariate analysis revealed that no factors, including postoperative participation in sports, were significantly

Self-Management Education Participation Among US Adults With Arthritis: Who's Attending?

Science.gov (United States)

Murphy, Louise B; Brady, Teresa J; Boring, Michael A; Theis, Kristina A; Barbour, Kamil E; Qin, Jin; Helmick, Charles G

2017-09-01

Self-management education (SME) programs teach people with chronic conditions skills to manage their health conditions. We examined patterns in SME program participation among US adults with arthritis ages ≥18 years. Respondents with arthritis were those who reported ever being diagnosed with arthritis by a doctor or health care provider. We analyzed 2014 National Health Interview Survey data to estimate the percentage (unadjusted and age-standardized) who ever attended an SME program overall and for selected subgroups, representativeness of SME participants relative to all adults with arthritis, and trends in SME course participation. In 2014, 1 in 9 US adults with arthritis (11.3% [95% confidence interval (95% CI) 10.4-12.3]; age-standardized 11.4% [95% CI 10.0-12.9]) had ever participated in an SME program. SME participation (age-standardized) was highest among those with ≥8 health care provider visits in the past 12 months (16.0% [95% CI 13.1-19.4]). Since 2002, the number of adults with arthritis who have ever participated in SME has increased by 1.7 million, but the percentage has remained constant. Despite its many benefits, SME participation among US adults with arthritis remains persistently low. By recommending that their patients attend SME programs, health care providers can increase the likelihood that their patients experience SME program benefits. © 2016, American College of Rheumatology.

Patient participation in ERS guidelines and research projects: the EMBARC experience

Directory of Open Access Journals (Sweden)

James D. Chalmers

2017-09-01

To understand the different ways in which patients can contribute to clinical guidelines, research projects and educational activities. To understand the barriers and potential solutions to these barriers from a physician’s perspective, in order to ensure meaningful patient involvement in clinical projects. To understand the barriers and potential solutions from a patient’s perspective, in order to meaningfully involve patients in clinical projects.

Korean Cancer Patients’ Awareness of Clinical Trials, Perceptions on the Benefit and Willingness to Participate

Science.gov (United States)

Lim, Yoojoo; Lim, Jee Min; Jeong, Won Jae; Lee, Kyung-Hun; Keam, Bhumsuk; Kim, Tae-Yong; Kim, Tae Min; Han, Sae-Won; Oh, Do Youn; Kim, Dong-Wan; Kim, Tae-You; Heo, Dae Seog; Bang, Yung-Jue; Im, Seock-Ah

2017-01-01

Purpose The purpose of this study was to assess current levels of awareness of clinical trials (CTs), perceptions regarding their benefits and willingness to participate to CTs among Korean cancer patients. Materials and Methods From December 2012 to August 2015, we distributed questionnaires to cancer patients receiving systemic anti-cancer therapy at Seoul National University Hospital, Seoul, Korea. Results A total of 397 out of 520 requested patients (76.3%) responded to the survey. Among the 397 patients, 62.5% were female and the median age was 52 years. Overall, 97.4% (387/397) answered that they have at least heard of CTs. When asked about their level of awareness, 23.8% (92/387) answered that they could more than roughly explain about CTs. The average visual analogue scale score of CT benefit in all patients was 6.43 (standard deviation, 2.20). Patients who were only familiar with the term without detailed knowledge of the contents had the least expectation of benefit from CTs (p=0.015). When asked about their willingness to participate in CTs, 56.7% (225/397) answered positively. Patients with higher levels of awareness of CTs showed higher willingness to participate (p awareness regarding CTs was positively related to the positive perception and willingness to participate. Although the general awareness of CTs was high, a relatively large proportion of patients did not have accurate knowledge; therefore, proper and accurate patient education is necessary. PMID:28392549

Recruitment and reasons for non-participation in a family-coping-orientated palliative home care trial (FamCope)

DEFF Research Database (Denmark)

Ammari, ABH; Hendriksen, Carsten; Rydahl Hansen, Susan

2015-01-01

professionals. However, an unexpectedly high number of families declined participation in the trial. We describe and discuss the recruitment strategy and patient reported reasons for non-participation to add to the knowledge about what impedes recruitment and to identify the factors that influence willingness...... to participate in research aimed at family coping early in the palliative care trajectory. Patients with advanced cancer and their closest relative were recruited from medical, surgical, and oncological departments. Reasons for non-participation were registered and characteristics of participants and non......-participants were compared to evaluate differences between subgroups of non-participants based on reasons not to participate and reasons to participate in the trial. A total of 65.9% of the families declined participation. Two main categories for declining participation emerged: first, that the "burden of illness...

Positive psychological interventions for people with epilepsy: An assessment on factors related to intervention participation.

Science.gov (United States)

Lai, Siew-Tim; Lim, Kheng-Seang; Tang, Venus; Low, Wah-Yun

2018-03-01

Positive psychological interventions (PPI) are increasingly employed as a coping strategy with physical and mental conditions, including neurological diseases. Its effectiveness on improving wellbeing in people with epilepsy (PWE) has been shown in a few studies. This study aimed to explore factors related to participants' willingness to engage in psychological interventions from the perspective of patients with epilepsy. Participants answered a needs assessment questionnaire eliciting information about their illness perception (Brief Illness Perception Questionnaire (Brief-IPQ)), emotions (Hospital Anxiety and Depression Scale (HADS)), willingness to participate in psychological interventions, preferences in types of PPI and intervention designs, as well as barriers in seeking mental health services. A total of 154 patients with epilepsy participated, with a mean age of 37.3years (range 16-86years). Most patients had focal epilepsy (68.2%), and drug-resistant (59.1%). Majority (71.4%) of them indicated a strong willingness to participate in PPI. Out of nine types of PPI, character strengths, mindfulness-based and expressive-based interventions were highly preferred. Those with negative illness perception (p=0.001), anxiety (p=0.004), and being unemployed (p=0.048) were more willing to participate in PPI. Most participants preferred group rather than individual session, and a shorter duration (30min) was favored by most. This study captured the self-report willingness to participate in psychological interventions. Findings suggested that psychological interventions delivered in short-group session were highly preferred. Future study is required to determine the feasibility of such design for patients with epilepsy. Copyright © 2017 Elsevier Inc. All rights reserved.

Development and psychometric properties of the Patient-Head Injury Participation Scale (P-HIPS) and the Patient-Head Injury Neurobehavioral Assessment Scale (P-HINAS): patient and family determined outcomes scales.

Science.gov (United States)

Deb, Shoumitro; Bryant, Eleanor; Morris, Paul G; Prior, Lindsay; Lewis, Glyn; Haque, Sayeed

2007-06-01

To develop a measure to assess post-acute outcome following from traumatic brain injury (TBI) with particular emphasis on the emotional and the behavioral outcome. The second objective was to assess the test-retest reliability, internal consistency, and factor structure of the newly developed patient version of the Head Injury Participation Scale (P-HIPS) and Patient-Head Injury Neurobehavioral Scale (P-HINAS). Thirty-two TBI individuals and 27 carers took part in in-depth qualitative interviews exploring the consequences of the TBI. Interview transcripts were analyzed and key themes and concepts were used to construct the 49-item P-HIPS. A postal survey was then conducted on a cohort of 113 TBI patients to 'field test' the P-HIPS and the P-HINAS. All individual 49 items of the P-HIPS and their total score showed good test-retest reliability (0.93) and internal consistency (0.95). The P-HIPS showed a very good correlations with the Mayo Portland Adaptability Inventory-3 (MPAI-3) (0.87) and a moderate negative correlation with the Glasgow Outcome Scale-Extended (GOSE) (-0.51). Factor analysis extracted the following domains: 'Emotion/Behavior,' 'Independence/Community Living,' 'Cognition' and 'Physical'. The 'Emotion/Behavior' factor constituted the P-HINAS, which showed good internal consistency (0.93), test-retest reliability (0.91) and concurrent validity with MPAI subscale (0.82). Both the P-HIPS and the P-HINAS show strong psychometric properties. The qualitative methodology employed in the construction stage of the questionnaires provided good evidence of face and content validity.

Gait adaptations with aging in healthy participants and people with knee-joint osteoarthritis.

Science.gov (United States)

Duffell, Lynsey D; Jordan, Stevan J; Cobb, Justin P; McGregor, Alison H

2017-09-01

The relationship between age and gait characteristics in people with and without medial compartment osteoarthritis (OA) remains unclear. We aimed to characterize this relationship and to relate biomechanical and structural parameters in a subset of OA patients. Twenty five participants with diagnosed unilateral medial knee OA and 84 healthy participants, with no known knee pathology were recruited. 3D motion capture was used to analyse sagittal and coronal plane gait parameters while participants walked at a comfortable speed. Participants were categorized according to age (18-30, 31-59 and 60+ years), and those with and without OA were compared between and within age groups. In a subset of OA patients, clinically available Computed Tomography images were used to assess joint structure. Differences in coronal plane kinematics at the hip and knee were noted in participants with OA particularly those who were older compared with our healthy controls, as well as increased knee moments. Knee adduction moment correlated with structural parameters in the subset of OA patients. Increased knee moments and altered kinematics were observed in older participants presenting with OA only, which seem to be related to morphological changes in the joint due to OA, as opposed to being related to the initial cause of medial knee OA. Copyright © 2017. Published by Elsevier B.V.

The experience of patients participating in a small randomised control trial that explored two different interventions to reduce anxiety prior to an MRI scan.

Science.gov (United States)

Tugwell-Allsup, J; Pritchard, A W

2018-05-01

This paper reports qualitative findings from within a larger randomised control trial where a video clip or telephone conversation with a radiographer was compared to routine appointment letter and information sheet to help alleviate anxiety prior to their MRI scan. Questionnaires consisting of three free-text response questions were administered to all of the 74 patients recruited to the MRI anxiety clinical trial. The questionnaire was designed to establish patients' experiences of the intervention they had received. These questionnaires were administered post-scan. Two participants from each trial arm were also interviewed. A thematic approach was utilised for identifying recurrent categories emerging from the qualitative data which are supported by direct quotations. Participants in the interventional groups commented positively about the provision of pre-MRI scan information they received and this was contrastable with the relatively indifferent responses observed among those who received the standard information letter. Many important themes were identified including the patients needs for clear and simplified information, the experience of anticipation when waiting for the scan, and also the informally acquired information about having an MRI scan i.e. the shared experiences of friends and family. All themes highlighted the need for an inclusive and individually tailored approach to pre-scan information provision. Qualitative data collected throughout the trial is supportive of the statistical findings, where it is asserted that the use of a short video clip or a radiographer having a short conversation with patients before their scan reduces pre-scan anxiety. Crown Copyright © 2017. Published by Elsevier Ltd. All rights reserved.