Objective to explore areas of consensus and conflict in relation to perceived public involvement (PI) barriers and drivers, perceived impacts of PI and ways of evaluating PI approaches in health and social care research.Background Internationally and within the UK the recognition of potential benefits of PI in health and social care research is gathering momentum and PI is increasingly identified by organisations as a prerequisite for funding. However, there is relatively little examination of the impacts of PI and how those impacts might be measured.Design Mixed method, three-phase, modified Delphi technique, conducted as part of a larger MRC multiphase project.Sample Clinical and non-clinical academics, members of the public, research managers, commissioners and funders.Findings This study found high levels of consensus about the most important barriers and drivers to PI. There was acknowledgement that tokenism was common in relation to PI; and strong support for the view that demonstrating the impacts and value of PI was made more difficult by tokenistic practice. PI was seen as having intrinsic value; nonetheless, there was clear support for the importance of evaluating its impact. Research team cohesion and appropriate resources were considered essential to effective PI implementation. Panellists agreed that PI can be challenging, but can be facilitated by clear guidance, together with models of good practice and measurable standards.Conclusions This study is the first to present empirical evidence of the opinions voiced by key stakeholders on areas of consensus and conflict in relation to perceived PI barriers and drivers, perceived impacts of PI and the need to evaluate PI. As such it further contributes to debate around best practice in PI, the potential for tokenism and how best to evaluate the impacts of PI. These findings have been used in the development of the Public Involvement Impact Assessment Framework (PiiAF), an online resource which offers guidance to researchers and members of the public involved in the PI process.

BACKGROUND: Individuals with a history of recurrent depression have a high risk of repeated depressive relapse or recurrence. Maintenance antidepressants for at least 2 years is the current recommended treatment, but many individuals are interested in alternatives to medication. Mindfulness-based cognitive therapy (MBCT) has been shown to reduce risk of relapse or recurrence compared with usual care, but has not yet been compared with maintenance antidepressant treatment in a definitive trial. We aimed to see whether MBCT with support to taper or discontinue antidepressant treatment (MBCT-TS) was superior to maintenance antidepressants for prevention of depressive relapse or recurrence over 24 months. METHODS: in this single-blind, parallel, group randomised controlled trial (PREVENT), we recruited adult patients with three or more previous major depressive episodes and on a therapeutic dose of maintenance antidepressants, from primary care general practices in urban and rural settings in the UK. Participants were randomly assigned to either MBCT-TS or maintenance antidepressants (in a 1:1 ratio) with a computer-generated random number sequence with stratification by centre and symptomatic status. Participants were aware of treatment allocation and research assessors were masked to treatment allocation. The primary outcome was time to relapse or recurrence of depression, with patients followed up at five separate intervals during the 24-month study period. The primary analysis was based on the principle of intention to treat. The trial is registered with Current Controlled Trials, ISRCTN26666654. FINDINGS: Between March 23, 2010, and Oct 21, 2011, we assessed 2188 participants for eligibility and recruited 424 patients from 95 general practices. 212 patients were randomly assigned to MBCT-TS and 212 to maintenance antidepressants. The time to relapse or recurrence of depression did not differ between MBCT-TS and maintenance antidepressants over 24 months (hazard ratio 0·89, 95% CI 0·67-1·18; p=0·43), nor did the number of serious adverse events. Five adverse events were reported, including two deaths, in each of the MBCT-TS and maintenance antidepressants groups. No adverse events were attributable to the interventions or the trial. INTERPRETATION: We found no evidence that MBCT-TS is superior to maintenance antidepressant treatment for the prevention of depressive relapse in individuals at risk for depressive relapse or recurrence. Both treatments were associated with enduring positive outcomes in terms of relapse or recurrence, residual depressive symptoms, and quality of life. FUNDING: National Institute for Health Research (NIHR) Health Technology Assessment (HTA) programme, and NIHR Collaboration for Leadership in Applied Health Research and Care South West Peninsula.

BACKGROUND: Much has been written about public involvement (PI) in health and social care research, but underpinning values are rarely made explicit despite the potential for these to have significant influence on the practice and assessment of PI. OBJECTIVE: the narrative review reported here is part of a larger MRC-funded study which is producing a framework and related guidance on assessing the impact of PI in health and social care research. The review aimed to identify and characterize the range of values associated with PI that are central elements of the framework. METHODS: We undertook a review and narrative synthesis of diverse literatures of PI in health and social care research, including twenty existing reviews and twenty-four chapters in sixteen textbooks. RESULTS: Three overarching value systems were identified, each containing five value clusters. (i) a system concerned with ethical and/or political issues including value clusters associated with empowerment; change/action; accountability/transparency; rights; and ethics (normative values). (ii). A system concerned with the consequences of public involvement in research including value clusters associated with effectiveness; quality/relevance; validity/reliability; representativeness/objectivity/generalizability; and evidence (substantive values). (iii) a system concerned with the conduct of public involvement in including value clusters associated with Partnership/equality; respect/trust; openness and honesty; independence; and clarity (process values). CONCLUSION: Our review identified three systems associated with PI in health and social care research focused on normative, substantive and process values. The findings suggest that research teams should consider and make explicit the values they attach to PI in research and discuss ways in which potential tensions may be managed in order to maximize the benefits of PI for researchers, lay experts and the research.

BACKGROUND: Vocational rehabilitation (VR) is aimed at engaging or re-engaging individuals with work participation and employment. The International Classification of Functioning, Disability and Health (ICF) by the World Health Organization can be operationalized in the context of VR. The objective of this study is to review the literature to identify outcomes or measures being used in VR using a systematic review methodology and link those measures to the ICF. METHODS: We applied a structured search strategy using multiple databases. Items or constructs of the measures or outcomes identified were linked to the ICF by two trained individuals. RESULTS: We have identified 648 measures which contained 10,582 concepts that were linked to the ICF which resulted in 87 second-level ICF categories. Out of the 87 categories, 31 (35.6%) were related to body functions, 43 (49.4%) were related to activities and participation, and 13 (14.9%) were related to environmental factors. No category was related to body structures. CONCLUSIONS: Our review found great diversity in the ICF contents of the measures used in different VR settings and study populations, which indicates the complexity of VR. This systematic review has provided a list of ICF categories which could be considered towards a successful VR.

The objective of this systematic review and content analysis was to identify and quantify the concepts contained in patient-administered health status measures in sleep medicine practice and research using the International Classification of Functioning, Disability and Health (ICF) as a reference. Both generic and condition-specific patient-administered measures/questionnaires used in sleep medicine practice and research were identified and selected. A comprehensive search strategy for reviews, National/International Guidelines and Standard References to ensure that all areas of functioning, disability and health were captured was used. The contents of the selected measures were examined and linked to the ICF using established linking rules. The frequencies of ICF categories covering the concepts contained in the 115 patient-administered measures were used for the descriptive analysis and content comparison. of these, 35 were of a generic nature, 17 were symptom-related, and 63 condition-specific. The concepts identified in the questionnaires' items were predominantly linked to categories of the ICF component related to body functions (61.4%), followed by activities and participation (15.3%), and then environmental factors (9.8%). The measures vary greatly with regard to the number and specificity of the ICF categories covered, as indicated by the proportional indices of content density and content diversity. The ICF provides a useful reference to identify, quantify and compare the concepts contained in health status measures used in sleep medicine practice and research.

Introduction Vocational rehabilitation (VR) emphasizes a need for medical support, rehabilitation and biopsychosocial approach to enable individuals to successfully participate in the workforce. Optimal rehabilitation management relies on an in-depth knowledge of the typical spectrum of problems encountered of patients in VR. The International Classification of Functioning, Disability and Health (ICF) is based on a universal conceptual model and provides a holistic view of functioning of the lived experience of people such as those undergoing VR. The objectives of this study are to describe the functioning and health of persons undergoing VR and to identify the most common problems around work and in VR using the ICF as the reference framework. Methods an empirical cross-sectional multicenter study was conducted using convenience sampling from March 2009 to March 2010. Data were collected using a Case Record Form rated by health professionals which was based on an extended version of the ICF Checklist containing 292 ICF categories and sociodemographic information. Results 152 patients with various health conditions participated. We identified categories from all four ICF components: 24 for body functions, six for body structures, 45 for activities and participation, and 25 for environmental factors. Conclusions Our study identified a multitude of ICF categories that describe functioning domains and which represent the complexity of VR. Such a comprehensive approach in assessing patients in VR may help to understand and customize the process of VR in the clinical setting and to enhance multidisciplinary communication. © 2011 Springer Science+Business Media, LLC.

We conducted an explorative, cross-sectional, multi-centre study in order to identify the most common problems of people with any kind of (primary) sleep disorder in a clinical setting using the International Classification of Functioning, Disability and Health (ICF) as a frame of reference. Data were collected from patients using a structured face-to-face interview of 45-60 min duration. A case record form for health professionals containing the extended ICF Checklist, sociodemographic variables and disease-specific variables was used. The study centres collected data of 99 individuals with sleep disorders. The identified categories include 48 (32%) for body functions, 13 (9%) body structures, 55 (37%) activities and participation and 32 (22%) for environmental factors. 'Sleep functions' (100%) and 'energy and drive functions', respectively, (85%) were the most severely impaired second-level categories of body functions followed by 'attention functions' (78%) and 'temperament and personality functions' (77%). With regard to the component activities and participation, patients felt most restricted in the categories of 'watching' (e.g. TV) (82%), 'recreation and leisure' (75%) and 'carrying out daily routine' (74%). Within the component environmental factors the categories 'support of immediate family', 'health services, systems and policies' and 'products or substances for personal consumption [medication]' were the most important facilitators; 'time-related changes', 'light' and 'climate' were the most important barriers. The study identified a large variety of functional problems reflecting the complexity of sleep disorders. The ICF has the potential to provide a comprehensive framework for the description of functional health in individuals with sleep disorders in a clinical setting.

INTRODUCTION: Vocational rehabilitation (VR) emphasizes a need for medical support, rehabilitation and biopsychosocial approach to enable individuals to successfully participate in the workforce. Optimal rehabilitation management relies on an in-depth knowledge of the typical spectrum of problems encountered of patients in VR. The International Classification of Functioning, Disability and Health (ICF) is based on a universal conceptual model and provides a holistic view of functioning of the lived experience of people such as those undergoing VR. The objectives of this study are to describe the functioning and health of persons undergoing VR and to identify the most common problems around work and in VR using the ICF as the reference framework. METHODS: an empirical cross-sectional multicenter study was conducted using convenience sampling from March 2009 to March 2010. Data were collected using a Case Record Form rated by health professionals which was based on an extended version of the ICF Checklist containing 292 ICF categories and sociodemographic information. RESULTS: 152 patients with various health conditions participated. We identified categories from all four ICF components: 24 for body functions, six for body structures, 45 for activities and participation, and 25 for environmental factors. CONCLUSIONS: Our study identified a multitude of ICF categories that describe functioning domains and which represent the complexity of VR. Such a comprehensive approach in assessing patients in VR may help to understand and customize the process of VR in the clinical setting and to enhance multidisciplinary communication.

BACKGROUND/OBJECTIVES: the International Classification of Functioning, Disability and Health (ICF) provides a comprehensive and universally accepted framework to classify changes in functioning related to health conditions. Comprehensive and Brief Core Sets have been defined for various disorders but not for sleep disorders. Such a Core Set would greatly enhance the techniques available to describe the impact of sleep disorders on patients. The overarching purpose of this paper is to report on phase 1 of the international and World Health Organization (WHO) endorsed consensus process in identifying ICF Core Sets for sleep disorders. METHODS: a formal decision-making and consensus process which integrated evidence gathered from preparatory studies was carried out. Relevant ICF categories were selected by a sample of international experts from different backgrounds using the nominal group technique. RESULTS: Twenty-six experts from 22 countries and different professional backgrounds attended the consensus conference. Altogether 120 second- or third-level ICF categories were included in the Comprehensive ICF Core Set with the following ICF component split: 49 categories from body functions, 8 from body structures, 31 from activities and participation and 32 from environmental factors. The Brief ICF Core Set included a total of 15 second-level categories: 5 body functions (sleep, energy and drive, attention, consciousness, respiration functions); 3 body structures (brain, respiratory system, pharynx); 4 activities and participation (focusing attention, driving, handling stress and other psychological demands, carrying out daily routine); and 3 environmental factors (immediate family; health services, systems, and policies; and health professionals). CONCLUSION: a formal consensus process integrating evidence and expert opinion led to the first version of the ICF Core Sets for persons with sleep disorders. Further validation of the Core Set is needed.

OBJECTIVES: the objective of this study is to identify relevant aspects of functioning as well as related environmental factors from the perspective of health professionals worldwide experienced in treating persons with any kind of (primary) sleep disorder. METHODS: a structured email survey was sent to 174 selected international experts. Using six open-ended questions, physicians, nurses, therapists, technicians, biologists and psychologists were asked to indicate the problems in functioning experienced by individuals with (primary) sleep disorders including contextual factors like environmental and personal factors which influence functioning. The International Classification of Functioning, Disability and Health (ICF) was used as a frame of reference to analyse the data. All answers were translated ("linked") to the ICF based on established coding rules. Absolute and relative frequencies of the linked ICF categories were reported. RESULTS: One hundred and twenty-three experts (70.7%) from six World Health Organization (WHO) regions (54 countries) mentioned 5200 themes which were linked to 7256 ICF categories. The majority of these linkings (33.3%) were attributed to 58 different ICF categories of the ICF component body functions, followed by 21.8% of linkings to 52 categories of environmental factors, 16.1% of linkings to 49 different categories in activities and participation, and 9.7% of linkings to 29 categories of body structures. CONCLUSION: Health professionals addressed a large variety of functional problems reflecting the complexity of sleep disorders. The ICF provided a comprehensive framework in order to integrate answers from different professional backgrounds and different world regions.

We conducted a qualitative, multicenter study using a focus group design to explore the lived experiences of persons with any kind of primary sleep disorder with regard to functioning and contextual factors using six open-ended questions related to the International Classification of Functioning, Disability and Health (ICF) components. We classified the results using the ICF as a frame of reference. We identified the meaningful concepts within the transcribed data and then linked them to ICF categories according to established linking rules. The six focus groups with 27 participants yielded a total of 6986 relevant concepts, which were linked to a total of 168 different second-level ICF categories. From the patient perspective, the ICF components: (1) Body Functions; (2) Activities & Participation; and (3) Environmental Factors were equally represented; while (4) Body Structures appeared poignantly less frequently. Out of the total number of concepts, 1843 concepts (26%) were assigned to the ICF component Personal Factors, which is not yet classified but could indicate important aspects of resource management and strategy development of those who have a sleep disorder. Therefore, treatment of patients with sleep disorders must not be limited to anatomical and (patho-)physiological changes, but should also consider a more comprehensive view that includes patient's demands, strategies and resources in daily life and the contextual circumstances surrounding the individual. © 2010 European Sleep Research Society.

PURPOSE: Visual cues from persons with impairments may trigger stereotypical generalisations that lead to prejudice and discrimination. The main objective of this pilot study is to examine whether visual stimuli of impairment activate latent prejudice against disability and whether this connection can be counteracted with priming strategies. METHODS: in a field experiment, participants were asked to rate photographs showing models with mental impairments, wheelchair users with paraplegia, and persons without any visible impairment. Participants should appraise the models with regard to several features (e.g. communicativeness, intelligence). One hundred participants rated 12 photo models yielding a total of 1183 observations. One group of participants was primed with a cover story introducing visual perception of impairment as the study's gist, while controls received neutral information. RESULTS: Photo models with mental impairments were rated lowest and models without visible impairment highest. In participants who did not have prior contacts with persons with impairments, priming led to a levelling of scores of models with and without impairment. Prior contacts with persons with impairments created similar effects as the priming. Unexpectedly, a pattern of converse double discrimination to the disadvantage of men with mental impairments was revealed. CONCLUSION: Signs of stereotypical processing of visual cues of impairment have been found in participants of the Swiss general population. Personal contact with persons with impairments as well as priming participants seems to reduce stereotyping.

BACKGROUND AND PURPOSE: Due to the increasing importance of quality of life assessments in obstructive sleep apnea (OSA) patients and due to an increased use of the International Classification of Functioning, Disability and Health (ICF), for comparative purposes it is essential to understand the relationship between health-related quality of life (HRQOL) instruments and the ICF. The purpose of this study was to compare the content covered by OSA-specific instruments using the ICF. PATIENTS AND METHODS: OSA-specific instruments were identified, including the Calgary Sleep Apnea Quality of Life Index, the Functional Outcomes of Sleep Questionnaire, the Obstructive Sleep Apnea Patient-Oriented Severity Index, and the Quebec Sleep Questionnaire, and linked to the ICF by six health professionals according to standardized guidelines. The degree of agreement between health professionals was calculated by means of the kappa statistic. RESULTS: a total of 308 concepts were identified and linked to 78 different ICF categories; 35 categories of the component body function, one category of the component body structure, 38 categories of the component activities and participation, and four categories of the component environmental factors. Only contents within the chapters mental functions, mobility and social life were addressed by all instruments. Forty-seven categories were covered by only one instrument. CONCLUSION: the ICF proved highly useful for the comparison of HRQOL instruments. This analysis may help researchers and clinicians to choose the most appropriate HRQOL instrument for a specific purpose as well as help to compare study outcomes of studies using different instruments for HRQOL assessment.