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Objectives: To identify official sources that routinely collect data on functioning in Switzerland, to provide an overview of the existing data and its comparability, and to assess the extent to which the data is suitable for developing a functioning metric and indicator. Methods: Data sources were identified through an iterative search. Standardized rules were applied to map the functioning information assessed by the sources using a current WHO functioning and disability survey as a reference framework for the content comparison. Results: Four sources were identified: the Swiss Survey of Health, Ageing and Retirement in Europe (SHARE), the Swiss Health Survey (SHS), the Lausanne cohort 65+ (Lc65+), and the Swiss Household Panel (SHP). All tools addressed sleep functions, energy level, emotional functions, and sensation of pain. Additionally, nine functioning categories were common across three sources. Conclusion: Population data sources in Switzerland routinely collect comparable functioning data, which can serve as the basis for creating a functioning indicator. Among others, this indicator is relevant to complement mortality and morbidity data and to support both the estimation of rehabilitation and long-term care needs. [ABSTRACT FROM AUTHOR]

Background: The demographic changes affecting Switzerland and other European countries, including population ageing, will continue to challenge policymakers in building accessible, affordable, comprehensive and high-quality long-term care (LTC) systems. The purpose of this paper is to investigate how Switzerland's LTC system compares to other European countries, in order to inform how to respond to the increasing need for LTC. We carried out a descriptive study using secondary data from key national and international organizations. Methods: By comparing the financing, workforce, service delivery and need for LTC in Switzerland, Germany, Italy, Norway and the United Kingdom, we described similarities and differences in these five European countries between 2005-2019. Thirty-three indicators within five domains were analysed: (1) Population statistics and health expenditure, (2) Need for LTC, (3) LTC financing, (4) LTC service delivery, and (5) LTC workforce. Results: Switzerland has the highest life expectancy in comparison to the other four high-income countries. However, similarly to other countries, the years lived with disability are increasing in Switzerland. Switzerland's public expenditure on LTC as a share of GDP is lower than that of Norway and Germany, yet out-of-pocket expenditure on LTC is highest in Switzerland. Switzerland has the highest proportion of persons receiving formal LTC both in institutions and at home. Switzerland has had the most pronounced increase in the proportion of over 65-year-olds receiving LTC at home. Even though more than fourfold more persons receive care at home, Switzerland still has more workforce in LTC institutions than in home-care. In comparison to Germany and the UK, Switzerland has a lower number of informal carers as a proportion of 50-year-olds and over, as well as fewer nationally available services for informal carers compared to Germany, Italy, Norway and the UK. Conclusions: Our comparative study corroborates the importance of improving the affordability of LTC, continuing to support the movement towards home care services, improving the support given to both the professional workforce and informal carers, and improving the amount and quality of LTC data. It also provides a valuable contrast to other European countries to support evidence-informed policymaking. [ABSTRACT FROM AUTHOR]

Background: The ageing process is highly heterogeneous leading to diverse ageing trajectories. Such trajectories have been modelled to study trends and determinants of ageing and could potentially be used to inform the planning of rehabilitation services at population level. The objective of this paper was to explore whether healthy ageing trajectories are suitable to identify targets for rehabilitation interventions for the ageing population. Methods: Data from the Ageing Trajectories of Health: Longitudinal Opportunities and Synergies (ATHLOS) harmonized cohort and the English Longitudinal Study of Ageing (ELSA), which is included in ATHLOS, were used. Growth mixture models were implemented to replicate healthy ageing trajectories modelled elsewhere as 'high stable', 'low stable', and 'rapid decline'. Regularized partial correlation networks were used to estimate expected-influence and bridge expected-influence centrality measures. Results: Healthy ageing trajectories modelled with ATHLOS (N = 131116) and ELSA (N = 14904) were consistent with previous work. At the first individual wave, prevalence of problems of respondents in the 'high stable' and 'rapid decline' trajectories were comparable; at the last individual wave, prevalence remained similar for the 'high stable' but increased substantially in all domains for the 'rapid decline' trajectory. Expected-influence centrality measures provided different results than prevalence estimates. For instance, in the first individual wave mobility and carrying, moving, and handling objects had highest impact on overall functioning for the 'rapid decline' and 'high stable' trajectories, while the most prevalent functioning problems concerned cognition, pain, as well as energy and drive functions. Conclusions: Our study stressed the relevance of healthy ageing trajectories for identifying functioning domains and categories that need to be targeted by rehabilitation services in a heterogeneous ageing population. The use of such trajectories at country level has the potential to make a meaningful contribution to the planning and delivery of rehabilitation interventions through health systems and to informed policy making. [ABSTRACT FROM AUTHOR]

Introduction: Rehabilitation is essential to foster healthy ageing. Older adults have unique rehabilitation needs due to a higher prevalence of noncommunicable diseases, higher susceptibility to infectious diseases, injuries, and mental health conditions. However, there is limited understanding of how rehabilitation is delivered to older adults. To address this gap, we conducted a scoping review to describe rehabilitation delivery models used to optimise older adults' functioning/functional ability and foster healthy ageing. Methods: We searched Medline and Embase (January 2015 to May 2022) for primary studies published in English describing approaches to provide rehabilitation to older adults. Three authors screened records for eligibility and extracted data independently and in duplicate. Data synthesis included descriptive quantitative analysis of study and rehabilitation provision characteristics, and qualitative analysis to identify rehabilitation delivery models. Results: Out of 6,933 identified records, 585 articles were assessed for eligibility, and 283 studies with 69,257 participants were included. We identified six rehabilitation delivery models: outpatient (24%), telerehabilitation (22%), home (18.5%), community (16.3%), inpatient (14.6%), and eldercare (4.7%). These models often involved multidisciplinary teams (31.5%) and follow integrated care principles (30.4%). Most studies used a disease-centred approach (59.0%), while studies addressing multimorbidity (6.0%) and prevalent health problems of older adults, such as pain, low hearing, and vision, or incontinence were scarce. The most frequently provided interventions were therapeutic exercises (54.1%), self-management education (40.1%), and assessment of personcentred goals (40%). Other interventions, such as assistive technology (8.1%) and environmental adaptations (7.4%) were infrequent. Conclusions: Focusing on primary studies, this scoping review provides an overview of rehabilitation delivery models that are used to foster healthy ageing and highlights research gaps that require further attention, including a lack of systematic assessment of functioning/functional ability, a predominance of disease-centred rehabilitation, and a scarcity of programmes addressing prevalent issues like pain, hearing/vision loss, fall prevention, incontinence, and sexual dysfunctions. Our research can facilitate evidence-based decision-making and inspire further research and innovation in rehabilitation and healthy ageing. Limitations of our study include reliance on published research to infer practice and not assessing model effectiveness. Future research in the field is needed to expand and validate our findings. [ABSTRACT FROM AUTHOR]

Background: People with intellectual disabilities are often left out of research on important topics. This exploratory study investigated their views on barriers and facilitators to accessing care at end of life, both at home and in a hospice setting. Method: This qualitative study used reflexive thematic analysis. Two focus groups were held via Zoom with a total of four participants. Results: Three themes were produced: Unsettling Transitions, Maintaining Familiarity, and Respecting People's Wishes. Keeping things as unchanged as possible at end of life was highlighted as an ideal. Respecting people's wishes and education were highlighted as facilitators to good end of life care. Conclusions: The themes identified in this study highlight the fears and wishes of this population with regards to receiving quality end of life care. Training for staff and families, as well as advanced care planning, could focus on enhancing facilitators and decreasing barriers for this population. [ABSTRACT FROM AUTHOR]

Background: A paucity of qualitative research on sensitive topics that focuses on participants with intellectual disabilities leaves their views unexplored. This scoping review mainly aimed to provide an overview of qualitative data collection methods used in research involving participants with intellectual disabilities to explore death and dying. Method: A scoping review of primary research and methodological papers published between January 2008 and March 2022 was conducted. The PRISMA‐ScR checklist was followed. Results: We identified 25 articles utilising four data collection methods: interviews, focus groups, the Nominal Group Technique, and participant observation. Data collection trends were identified, including accommodations for participants with intellectual disabilities, visual media used as a facilitator, and reporting of distress protocols. Most participants had mild to moderate intellectual disabilities. Conclusions: The included studies demonstrate a flexible approach that relies on the use of multiple methods. Future research must adequately report study characteristics to ensure transparency and reliability. [ABSTRACT FROM AUTHOR]

Background: The world population is ageing rapidly. Rehabilitation is one of the most effective health strategies for improving the health and functioning of older persons. An understanding of the current provision of rehabilitation services in primary care (PC) is needed to optimise access to rehabilitation for an ageing population. The objectives of this scoping review are a) to describe how rehabilitation services are currently offered in PC to older persons, and b) to explore age-related differences in the type of rehabilitation services provided. Methods: We conducted a secondary analysis of a scoping review examining rehabilitation models for older persons, with a focus on PC. Medline and Embase (2015–2022) were searched to identify studies published in English on rehabilitation services for people aged 50 +. Two authors independently screened records and extracted data using the World Health Organization (WHO)'s operational framework, the Primary Health Care Systems (PRIMASYS) approach and the WHO paper on rehabilitation in PC. Data synthesis included quantitative and qualitative analysis. Results: We synthesised data from 96 studies, 88.6% conducted in high-income countries (HICs), with 31,956 participants and identified five models for delivering rehabilitation to older persons in PC: community, home, telerehabilitation, outpatient and eldercare. Nurses, physiotherapists, and occupational therapists were the most common providers, with task-shifting reported in 15.6% of studies. The most common interventions were assessment of functioning, rehabilitation coordination, therapeutic exercise, psychological interventions, and self-management education. Environmental adaptations and assistive technology were rarely reported. Conclusions: We described how rehabilitation services are currently provided in PC and explored age-related differences in the type of rehabilitation services received. PC can play a key role in assessing functioning and coordinating the rehabilitation process and is also well-placed to deliver rehabilitation interventions. By understanding models of rehabilitation service delivery in PC, stakeholders can work towards developing more comprehensive and accessible services that meet the diverse needs of an ageing population. Our findings, which highlight the role of rehabilitation in healthy ageing, are a valuable resource for informing policy, practice and future research in the context of the United Nations Decade of Healthy Ageing, the Rehab2030 initiative and the recently adopted WHA resolution on strengthening rehabilitation in health systems, but the conclusions can only be applied to HICs and more studies are needed that reflect the reality in low- and middle-income countries. [ABSTRACT FROM AUTHOR]

This brief report proposes strategies to support qualitative research with people with intellectual disabilities on topics related to death and dying. We prepared a scoping review on methodological approaches used for qualitative research on death and dying involving participants with intellectual disabilities and a study on perceived barriers and facilitators to accessing end of life settings, conducted with co‐researchers on an online video communication platform. Through conducting these two studies, we found three strategies that we believe will increase the uptake of this research for policymakers, funding bodies and other researchers. The strategies concern research agendas, structured methodological guidance, and allocation of funds. When planning out qualitative research projects about death and dying topics, people with intellectual disabilities must be on the research agendas on topics related to death and dying. To realize this obligation, stakeholders would benefit from structured methodological guidance. The design, planning, and conduct of such studies would benefit greatly from such guidance and would ideally result in the uptake of this type of research. Additionally, proper funding taking into account needed but time‐consuming accommodations for participants is necessary. These strategy options aim to increase the amount of qualitative research that includes people with intellectual disabilities as participants. [ABSTRACT FROM AUTHOR]

Background: As the European population with Spinal Cord Injury (SCI) is expected to become older, a better understanding of ageing with SCI using functioning, the health indicator used to model healthy ageing trajectories, is needed. We aimed to describe patterns of functioning in SCI by chronological age, age at injury and time since injury across eleven European countries using a common functioning metric, and to identify country-specific environmental determinants of functioning. Methods: Data from 6'635 participants of the International Spinal Cord Injury Community Survey was used. The hierarchical version of Generalized Partial Credit Model, casted in a Bayesian framework, was used to create a common functioning metric and overall scores. For each country, linear regression was used to investigate associations between functioning, chronological age, age at SCI or time since injury for persons with para- and tetraplegia. Multiple linear regression and the proportional marginal variance decomposition technique were used to identify environmental determinants. Results: In countries with representative samples older chronological age was consistently associated with a decline in functioning for paraplegia but not for tetraplegia. Age at injury and functioning level were associated, but patterns differed across countries. An association between time since injury and functioning was not observed in most countries, neither for paraplegia nor for tetraplegia. Problems with the accessibility of homes of friends and relatives, access to public places and long-distance transportation were consistently key determinants of functioning. Conclusions: Functioning is a key health indicator and the fundament of ageing research. Enhancing methods traditionally used to develop metrics with Bayesian approach, we were able to create a common metric of functioning with cardinal properties and to estimate overall scores comparable across countries. Focusing on functioning, our study complements epidemiological evidence on SCI-specific mortality and morbidity in Europe and identify initial targets for evidence-informed policy-making. [ABSTRACT FROM AUTHOR]

Background: Data on functioning and disability collected at population level is essential to complement mortality and morbidity, to estimate rehabilitation needs of countries and regions and to monitor the Convention on the Rights of Persons with Disabilities (CRPD) and the Sustainable Development Goals (SDGs). The objective of this paper is to briefly report the development process of the WHO Model Disability Survey, its data analysis strategy as well as its reliability and ability to measure low to high levels of functioning and disability across countries. Methods: The development process is described in detail, and a secondary analysis using Rasch methods is conducted to report reliability and targeting using data from eight national and two regional implementations of the survey. Results: The currently available versions of the Model Disability Survey are presented. The survey has good to very good internal reliability and good targeting in all included countries. Conclusion: The participatory and evidence-based development, consideration of the expertise of stakeholders, the availability of previously developed ICF-based surveys, and WHO tools targeting functioning and disability are reflected in its good to very good psychometric properties. The survey has been implemented to date in Afghanistan, Cameroon, Chile, Costa Rica, India, Laos, Pakistan, Philippines, Sri Lanka, and Tajikistan, and is used to inform policy-making, to monitor the CRPD and SDGs and to plan the delivery of rehabilitation services. [ABSTRACT FROM AUTHOR]

Forming part of a larger project on how disabled people exercise active citizenship in nine European countries, this study examined factors that enhance or hamper disabled peoples' opportunities to participate fully and on equal terms with others in the domain of work. Twenty-six, gender-balanced life course interviews with persons living in Switzerland and representing four impairment groups and three age cohorts were conducted. Applying qualitative content analysis, we found that over the entire work life course environmental factors such as support structures and attitudes were most salient (as compared to personal factors and impairment effects), and that facilitating and impeding factors cut across impairment groups and age cohorts. To achieve parity of participation and to enhance people with disabilities' active citizenship and opportunities to access, and flourish in, the labour market, society has to both recognize their rights and provide sufficient economic resources to remove existing barriers. Having a paid job is an important aspect and sign of a person's social participation and inclusion. We collected personal stories of disabled people living in Switzerland to identify the barriers and support they experienced in finding and maintaining a suitable paid job. Most of the barriers identified were environmental and could have been addressed by workplace adjustments and policy changes. The diversity of the disabled interviewees was reflected in the barriers and support they experienced. However, the presence or absence of support from family members, job counsellors, employers and work colleagues played an important role across different types of disabilities. Recognizing and understanding the barriers that disabled people experience with regard to paid employment will help to develop appropriate social responses and individual strategies for self-help. [ABSTRACT FROM AUTHOR]

Background: Research efforts to measure the concept of healthy ageing have been diverse and limited to specific populations. This diversity limits the potential to compare healthy ageing across countries and/or populations. In this study, we developed a novel measurement scale of healthy ageing using worldwide cohorts.Methods: In the Ageing Trajectories of Health-Longitudinal Opportunities and Synergies (ATHLOS) project, data from 16 international cohorts were harmonized. Using ATHLOS data, an item response theory (IRT) model was used to develop a scale with 41 items related to health and functioning. Measurement heterogeneity due to intra-dataset specificities was detected, applying differential item functioning via a logistic regression framework. The model accounted for specificities in model parameters by introducing cohort-specific parameters that rescaled scores to the main scale, using an equating procedure. Final scores were estimated for all individuals and converted to T-scores with a mean of 50 and a standard deviation of 10.Results: A common scale was created for 343 915 individuals above 18 years of age from 16 studies. The scale showed solid evidence of concurrent validity regarding various sociodemographic, life and health factors, and convergent validity with healthy life expectancy (r = 0.81) and gross domestic product (r = 0.58). Survival curves showed that the scale could also be predictive of mortality.Conclusions: The ATHLOS scale, due to its reliability and global representativeness, has the potential to contribute to worldwide research on healthy ageing. [ABSTRACT FROM AUTHOR]

Making one's own choices is an important part of leading a fulfilling life within society. However, people with IDs often face significant obstacles when making their own decisions. Article 12 (Equal recognition before the law) of the United Nations Convention on the Rights of Persons with Disabilities (CRPD) aims to ensure firstly that people with IDs and others with compromised capacity are nonetheless recognized as legal individuals, and secondly that assistance is provided in the form of supported decision‐making in order to exercise this resulting legal capacity. It is unclear whether current national legislation in any country satisfies these requirements in practice. This study utilizes institutional ethnography to reveal how decision‐making is coordinated in practice for people with mild to moderate IDs living in supported residential environments in England, and to determine whether these processes are compliant with Article 12 of the CRPD. Data collection was based on observations, semi‐structured interviews, and documentary analysis, involving 29 participants including people with mild to moderate IDs. The results point to the complexity of supported decision‐making and identify three main categories of decision‐making: spontaneous decisions, mid‐term decisions, and strategic decisions. The data also show that people with mild to moderate IDs are able to exercise their legal capacity through support decision‐making in their everyday life. Immediate and informal supported decision‐making exists in daily practice for people with mild to moderate IDs living in supported residential environments. Although there are structures in place for implementing supported decision‐making, various barriers persist that limit the overall efficacy and consistency of the realization of supported decision‐making, for example, multiple use of mental capacity assessments. Such practices move away from the supported decision‐making model toward substituted decision‐making. [ABSTRACT FROM AUTHOR]

Background: Pain is a common symptom, often associated with neurological and musculoskeletal conditions, and experienced especially by females and by older people. The aims of this study are to evaluate the temporal variations of pain rates among general populations for the period 1991–2015 and to project 10-year pain rates. Methods: We used the harmonized dataset of ATHLOS project, which included 660,028 valid observations in the period 1990–2015 and we applied Bayesian age–period–cohort modeling to perform projections up to 2025. The harmonized Pain variable covers the content "self-reported pain experienced at the time of the interview", with a dichotomous (yes or no) modality. Results: Pain rates were higher among females, older subjects, in recent periods, and among observations referred to cohorts of subjects born between the 20s and the 60s. The 10-year projections indicate a noteworthy increase in pain rates in both genders and particularly among subjects aged 66 or over, for whom a 10–20% increase in pain rate is foreseen; among females only, a 10–15% increase in pain rates is foreseen for those aged 36–50. Conclusions: Projected increase in pain rates will require specific interventions by health and welfare systems, as pain is responsible for limited quality of subjective well-being, reduced employment rates and hampered work performance. Worksite and lifestyle interventions will therefore be needed to limit the impact of projected higher pain rates. [ABSTRACT FROM AUTHOR]

Background: Pain is a common symptom, often associated with neurological and musculoskeletal conditions, and experienced especially by females and by older people, and with increasing trends in general populations. Different risk factors for pain have been identified, but generally from studies with limited samples and a limited number of candidate predictors. The aim of this study is to evaluate the predictors of pain from a large set of variables and respondents. Methods: We used part of the harmonized dataset of ATHLOS project, selecting studies and waves with a longitudinal course, and in which pain was absent at baseline and with no missing at follow-up. Predictors were selected based on missing distribution and univariable association with pain, and were selected from the following domains: Socio-demographic and economic characteristics, Lifestyle and health behaviours, Health status and functional limitations, Diseases, Physical measures, Cognition, personality and other psychological measures, and Social environment. Hierarchical logistic regression models were then applied to identify significant predictors. Results: A total of 13,545 subjects were included of whom 5348 (39.5%) developed pain between baseline and the average 5.2 years' follow-up. Baseline risk factors for pain were female gender (OR 1.34), engaging in vigorous exercise (OR 2.51), being obese (OR 1.36) and suffering from the loss of a close person (OR 1.88) whereas follow-up risk factors were low energy levels/fatigue (1.93), difficulties with walking (1.69), self-rated health referred as poor (OR 2.20) or average to moderate (OR 1.57) and presence of sleep problems (1.80). Conclusions: Our results showed that 39.5% of respondents developed pain over a five-year follow-up period, that there are proximal and distal risk factors for pain, and that part of them are directly modifiable. Actions aimed at improving sleep, reducing weight among obese people and treating fatigue would positively impact on pain onset, and avoiding vigorous exercise should be advised to people aged 60 or over, in particular if female or obese. [ABSTRACT FROM AUTHOR]

Purpose: To evaluate the access to human rights of persons with disabilities who use prosthetic and orthotic assistive devices, and to compare groups of participants in terms of gender, residential area, income, and type and level of assistive device. The addressed areas were rights to: health, a standard of living adequate for health, education, marry and establish a family, vote, and work. Methods: Questionnaires were used to collect self-reported data from 139 lower-limb prosthetic and orthotic users in Sierra Leone. Results: About half of the participants considered their overall physical health good, while 37% said their mental health was bad. Most said they lacked access to medical care. About half of the participants had regular access to safe drinking water. Most had reasonable housing and 60% could read and write. Half of the participants were married and 70% had children. Almost all reported that they could vote if desired and about half were working. Conclusions: There is still a need for improved access to medical care when needed for persons with lower limb physical disability in Sierra Leone. Better access to food and clean water are also necessary to facilitate a standard of living adequate for health, to realize the health rights of persons with disabilities. In Sierra Leone, persons with disabilities need a source of regular income to access basic needs, including clean water, access to food, medical care, and medications which should be considered in addition to providing rehabilitation services. To facilitate implementation of the Convention on the Rights of Persons with Disabilities, Sierra Leone's health system needs to be strengthened: an increased number of healthcare staff should be educated, knowledge of disability should be improved in the general public to reduce negative attitudes toward persons with disabilities, persons with disabilities should be included in mainstream health services, and national development policies should target sustainable development goals to a greater extent than during the millennium development goal era. [ABSTRACT FROM AUTHOR]

Assistive technology has great potential to contribute to health, functioning, and quality of life. To date, as exemplified in the Canadian context, variations and inequities in access to assistive technology are evident; the development of legislation, policies, and programs has not kept up with the increasing use of assistive technology. In this article, we apply ;Daniels's (2008) theory of just health to argue that equitable access to assistive technology funding and services is necessary for justice. In doing so, we offer theoretical guidance for the development of legislation, policies, and programs to guide such access in health and social services. [ABSTRACT FROM AUTHOR]

Purpose The content of and methods for collecting health information often vary across settings and challenge the comparability of health information across time, individuals or populations. The International Classification of Functioning, Disability and Health (ICF) contains an exhaustive set of categories of information which constitutes a unified and consistent language of human functioning suitable as a reference for comparing health information. Methods and results In two earlier papers, we have proposed rules for linking existing health information to the ICF. Further refinements to these existing ICF Linking Rules are presented in this paper to enhance the transparency of the linking process. The refinements involve preparing information for linking, perspectives from which information is collected and the categorization of response options. Issues regarding the linking of information not covered or unspecified within the ICF are also revisited in this paper. Conclusion: The ICF Linking Rules are valuable for enhancing comparability of health information to ensure that information is available in a consistent manner to serve as a foundation for evidence-based decision-making across all levels of health systems. The refinements presented in this paper enhance transparency in, and ultimately reliability of the process of, linking health information to the ICF. Implications for Rehabilitation: The International Classification of Functioning, Disability and Health (ICF) constitutes a unified and consistent language of human functioning suitable as a reference for comparing health information. Comparability of information is essential to ensure that the widest range of information is available in a consistent manner for any decision-maker at all levels of the health system. The refined ICF Linking Rules presented in this article outline the method to establish comparability of health information based on the ICF. [ABSTRACT FROM AUTHOR]

Purpose: To demonstrate the value of the International Classification of Functioning, Disability and Health (ICF) notion of functioning as an operationalisation of health so as to describe, measure, and explain the lived experience of health, which is what matters to people about their health. Methods: Conceptual analysis based on evidence on the need to describe, measure, and compare states of health. Results: The ICF is the ideal framework to operationalise the lived experience of health. Its application in rehabilitation in particular, shows its value for the standardised reporting of outcomes of health interventions, clinical and services quality management, and evidence-informed health policy. Conclusions: The ICF provides both the frame of reference for an operationalisation of health that satisfies the intuitive understanding of what matters to people about their health and the technical tools for both health sciences and practice. An operationalisation of health is essential to describe the relative health status of individuals and populations as well as to measure the impact of rehabilitation interventions. An operationalisation of health focuses on the lived experience of health. The International Classification of Health, Functioning and Disability (ICF) is the ideal framework to operationalise the lived experience of health. [ABSTRACT FROM AUTHOR]

Background: Current health systems are increasingly challenged to meet the needs of a growing number of patients living with chronic and often multiple health conditions. The primary outcome of care, it is argued, is not merely curing disease but also optimizing functioning over a person's life span. According to the World Health Organization, functioning can serve as foundation for a comprehensive picture of health and augment the biomedical perspective with a broader and more comprehensive picture of health as it plays out in people's lives. The crucial importance of information about patient's functioning for a well-performing health system, however, has yet to be sufficiently appreciated. Methods: This paper argues that functioning information is fundamental in all components of health systems and enhances the capacity of health systems to optimize patients' health and health-related needs. Results and conclusion: Beyond making sense of biomedical disease patterns, health systems can profit from using functioning information to improve interprofessional collaboration and achieve cross-cutting disease treatment outcomes. [ABSTRACT FROM AUTHOR]

Abstract: The health system in Switzerland is considered as one of the best in the world. Nevertheless, to effectively and efficiently meet current and future challenges, an infrastructure and culture are needed where the best evidence is systematically made available and used, and the system evolves on the basis of a constant exchange between research, policy, and practice. The Swiss Learning Health System institutionalizes this idea as a multistakeholder national initiative to ensure continuous improvement through ongoing research and implementation. This article presents the objectives and mechanisms of the Swiss Learning Health System in the context of international initiatives to strengthen health systems and improve population health through learning cycles. [ABSTRACT FROM AUTHOR]

Disability as a health outcome deserves more attention than it has so far received. With people living longer and the epidemiological transition from infectious to noncommunicable diseases as the major cause of health burden, we need to focus attention on disability - the non-fatal impact of heath conditions - over and above our concern for causes of mortality.With the first Global Burden of Disease study, WHO provided a metric that enabled the comparison of the impact of diseases, drawing on a model of disability that focused on decrements of health. This model has since been elaborated in the International Classification of Functioning, Disability and Health as being either a feature of the individual or arising out of the interaction between the individual's health condition and contextual factors. The basis of WHO's ongoing work is a set of principles: that disability is a universal human experience; that disability is not determined solely by the underlying health condition or predicated merely on the presence of specific health conditions; and finally, that disability lies on a continuum from no to complete disability. To determine whether interventions at individual or population levels are effective, an approach to disability measurement that allows for an appropriate and fair comparison across health conditions is needed. WHO has designed the Model Disability Survey (MDS) to collect information relevant to understand the lived experience of disability, including the person's capacity to perform tasks actions in daily life, their actual performance, the barriers and facilitators in the environment they experience, and their health conditions. As disability gains prominence within the development agenda in the United Nations Sustainable Development Goals, and the implementation of the United Nations Convention on the Rights of Persons with Disabilities, the MDS will provide the data to monitor the progress of countries on meeting their obligations.The lesson learned from WHO's activities is that disability is a universal human experience, in the sense that everyone can be placed on a continuum of functioning and either currently experiences or is vulnerable to experiencing disability over the course of their lives. This understanding of disability is the key to mainstreaming disability within the public discourse. [ABSTRACT FROM AUTHOR]

Several state parties to the United Nations Convention on the Rights of Persons with Disabilities (CRPD) undertook recent revisions of their national legal capacity laws. These revisions aim to promote the autonomy of persons with disabilities as set forward by the CRPD. At the same time, the CRPD Committee calls for the abolishment of all forms of substitute decision-making through its first General Comment on Article 12 of the Convention. We thus describe the main components of new legal capacity laws of Belgium, the Czech Republic, France, Germany, and Switzerland and assess those in light of the General Comment. We argue that none of these countries completely abolished substitute decision-making regimes and align with the views that a more realistic interpretation should be given to the CRPD. Such interpretation would provide better guidance for countries in the implementation of Article 12. [ABSTRACT FROM AUTHOR]

Background: Persons with brain disorders experience significant psychosocial difficulties (PSD) in daily life, e.g. problems with managing daily routine or emotional lability, and the level of the PSD depends on social, physical and political environments, and psychologic-personal determinants. Our objective is to determine a brief set of environmental and psychologic-personal factors that are shared determinants of PSD among persons with different brain disorders. Methods: Cross-sectional study, convenience sample of persons with either dementia, stroke, multiple sclerosis, epilepsy, migraine, depression, schizophrenia, substance dependence or Parkinson’s disease. Random forest regression and classical linear regression were used in the analyses. Results: 722 subjects were interviewed in four European countries. The brief set of determinants encompasses presence of comorbidities, health status appraisal, stressful life events, personality changes, adaptation, self-esteem, self-worth, built environment, weather, and health problems in the family. Conclusions: The identified brief set of common determinants of PSD can be used to support the implementation of cross-cutting interventions, social actions and policy tools to lower PSD experienced by persons with brain disorders. This set complements a recently proposed reliable and valid direct metric of PSD for brain disorders called PARADISE24. [ABSTRACT FROM AUTHOR]

Background: Rehabilitation care is fundamental to health and human dignity and a human right enshrined in the United Nations Convention on the Rights of Persons with Disabilities. The provision of rehabilitation is important for reducing the need for formal support and enabling persons with disabilities to lead an independent life. Increasingly scholars and advocacy groups voice concerns over the significant barriers facing people with disabilities in accessing appropriate and quality rehabilitation. A growing body of research highlights a "respond-need" gap in the provision of rehabilitation and assistive technologies and underscore the lack of indicators for assessing performance of rehabilitation systems and monitoring States compliance with human rights standards in rehabilitation service planning and programming. While research on human rights and health monitoring has increased exponentially over the last decade far too little attention has been paid to rehabilitation services. The proposed research aims to reduce this knowledge gap by developing a human rights based monitoring framework with indicators to support human rights accountability and performance assessment in rehabilitation. Methods/Design: Concept mapping, a stakeholder-driven approach will be used as the core method to identify rights based indicators and develop the rehabilitation services monitoring framework. Concept mapping requires participants from various stakeholders groups to generate a list of the potential indicators through on line brainstorming, sort the indicators for conceptual similarity into clusters and rate them against predefined criteria. Multidimensional scaling and hierarchical cluster data analysis will be performed to develop the monitoring framework while bridging analysis will provide useful insights about patterns of agreement or disagreement among participants views on indicators. Discussion: This study has the potential to influence future practices on data collection and measurement of compliance with human rights standards in rehabilitation service delivery and organization. The development of a valid and universally applicable set of indicators will have a profound impact on the design and implementation of evidence informed disability policies and programs as it can support countries in strengthening performance measurement through documentation of comparative information on rehabilitation care systems. Most importantly, the resulting indicators can be used by disabled people's organizations as well as national and international institutions to define a minimal standard for monitoring and reporting progress on the implementation of the Convention on the Rights of Persons with Disabilities in the area of rehabilitation. [ABSTRACT FROM AUTHOR]

Objective: To test the hypothesis of ‘horizontal epidemiology’, i.e. that psychosocial difficulties (PSDs), such as sleep disturbances, emotional instability and difficulties in personal interactions, and their environmental determinants are experienced in common across neurological and psychiatric disorders, together called brain disorders. Study Design: A multi-method study involving systematic literature reviews, content analysis of patient-reported outcomes and outcome instruments, clinical input and a qualitative study was carried out to generate a pool of PSD and environmental determinants relevant for nine different brain disorders, namely epilepsy, migraine, multiple sclerosis, Parkinson’s disease, stroke, dementia, depression, schizophrenia and substance dependency. Information from these sources was harmonized and compiled, and after feedback from external experts, a data collection protocol including PSD and determinants common across these nine disorders was developed. This protocol was implemented as an interview in a cross-sectional study including a convenience sample of persons with one of the nine brain disorders. PSDs endorsed by at least 25% of patients with a brain disorder were considered associated with the disorder. PSD were considered common across disorders if associated to 5 out of the 9 brain disorders and if among the 5 both neurological and psychiatric conditions were represented. Setting: The data collection protocol with 64 PSDs and 20 determinants was used to collect data from a convenience sample of 722 persons in four specialized health care facilities in Europe. Results: 57 of the PSDs and 16 of the determinants included in the protocol were found to be experienced across brain disorders. Conclusion: This is the first evidence that supports the hypothesis of horizontal epidemiology in brain disorders. This result challenges the brain disorder-specific or vertical approach in which clinical and epidemiological research about psychosocial difficulties experienced in daily life is commonly carried in neurology and psychiatry and the way in which the corresponding health care delivery is practiced in many countries of the world. [ABSTRACT FROM AUTHOR]

Objective: To construct a metric of the impact of brain disorders on people’s lives, based on the psychosocial difficulties (PSDs) that are experienced in common across brain disorders. Study Design: Psychometric study using data from a cross-sectional study with a convenience sample of 722 persons with 9 different brain disorders interviewed in four European countries: Italy, Poland, Spain and Finland. Questions addressing 64 PSDs were first reduced based on statistical considerations, patient’s perspective and clinical expertise. Rasch analyses for polytomous data were also applied. Setting: In and outpatient settings. Results: A valid and reliable metric with 24 items was created. The infit of all questions ranged between 0.7 and 1.3. There were no disordered thresholds. The targeting between item thresholds and persons’ abilities was good and the person-separation index was 0.92. Persons’ abilities were linearly transformed into a more intuitive scale ranging from zero (no PSDs) to 100 (extreme PSDs). Conclusion: The metric, called PARADISE 24, is based on the hypothesis of horizontal epidemiology, which affirms that people with brain disorders commonly experience PSDs. This metric is a useful tool to carry out cardinal comparisons over time of the magnitude of the psychosocial impact of brain disorders and between persons and groups in clinical practice and research. [ABSTRACT FROM AUTHOR]

Background: Lived health and biological health are two different perspectives of health introduced by the International Classification of Functioning, Disability and Health (ICF). Since in the concept of lived health the impact of the environment on biological health is inherently included, it seems intuitive that when identifying the environmental determinants of health, lived health is the appropriate outcome. The Multilevel Item Response Theory (MLIRT) model has proven to be a successful method when dealing with the relation between a latent variable and observed variables. The objective of this study was to identify environmental factors associated with lived health when controlling for biological health by using the MLIRT framework. Methods: We performed a psychometric study using cross-sectional data from the Spanish Survey on Disability, Independence and Dependency Situation. Data were collected from 17,303 adults living in 15,263 dwellings. The MLIRT model was used for each of the two steps of the analysis to: (1) calculate people's biological health abilities and (2) estimate the association between lived health and environmental factors when controlling for biological health. The hierarchical structure of individuals in dwellings was considered in both models. Results: Social support, being able to maintain one's job, the extent to which one's health needs are addressed and being discriminated against due to one's health problems were the environmental factors identified as associated with lived health. Biological health also had a strong positive association with lived health. Conclusions: This study identified environmental factors associated with people's lived health differences within and between dwellings according to the MLIRT-model approach. This study paves the way for the future implementation of the MLIRT model when analysing ICF-based data. [ABSTRACT FROM AUTHOR]