Rehabilitation in primary care for an ageing population: a secondary analysis from a scoping review of rehabilitation delivery models.

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.

Perceived barriers and facilitators to good end of life care: Focusing on people with intellectual disabilities.

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.

Qualitative methodological approaches involving participants with intellectual disabilities: Scoping review of literature exploring death and dying.

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.

Beneficiaries of Rehabilitation.

Recent research and the actions of the World Health Organization (WHO) have clarified the nature and value of rehabilitation as a key health strategy of the 21st century. However, strengthening rehabilitation in national health systems around the world is a challenge, partly because there is not an evidence-based argument that rehabilitation is a good economic and social investment. This argument, in turn, depends on characterizing the current and potential beneficiaries of rehabilitation, namely the individuals who could benefit from rehabilitation services whether or not they currently receive these services. Although identifying current beneficiaries is essential for evaluating the current demand for rehabilitation in existing health systems, as well as for making the economic investment case for rehabilitation within national health systems, it is only by characterizing potential beneficiaries that we can identify unmet needs and the potential social effect of rehabilitation. The objective of this study is to take a preliminary step toward both tasks by offering an overview of intuitively plausible approaches to characterizing beneficiaries of rehabilitation and to highlight limitations and challenges with each approach. We rely on the WHO's definition of rehabilitation, particularly the aim of rehabilitation to "optimize functioning and reduce disability," as our starting point.

The International Spinal Cord Injury Survey: The Way Forward.

As a community survey of individuals living with spinal cord injury in 22 countries, representing all 6 of the World Health Organization regions, the International Spinal Cord Injury (InSCI) community survey is one of the few surveys that highlights not only basic medical issues, but also the impact of spinal cord injury (SCI) on the everyday lives of people. The InSCI survey is part of a much larger project known as the Learning Health System for SCI Initiative (LHS-SCI). The objective of this article is to highlight some of the ongoing and planned next steps at the national and international levels. The implementation phase of the LHS-SCI initiative, beginning with the publication of primary results and extending until 2023, will use the results of the InSCI survey as evidence for implementation of recommendations for improving the societal response to the needs of individuals with SCI at the national level. To illustrate the variety of implementation activities currently underway, we provide country examples from Australia, Morocco, Malaysia, and Germany to demonstrate the diversity of approaches to the implementation of InSCI data. The implementation phase of the LHS-SCI initiative promises to usher in a new era of SCI research that will be seamlessly linked to ongoing and effective implementation actions, at both international and national levels and across settings from clinical practice, health systems management, and national policy.

Quality of Life and the Health System: A 22-Country Comparison of the Situation of People With Spinal Cord Injury.

OBJECTIVE: To analyze and compare how performance of the health system are linked to the self-reported quality of life (QOL) of people with spinal cord injury (SCI) in 22 countries participating in the International Spinal Cord (InSCI) community survey. DESIGN: Cross-sectional survey. SETTING: Twenty-two countries representing all 6 World Health Organization regions, community setting. PARTICIPANTS: Persons (N=12,591) with traumatic or nontraumatic SCI aged ≥18 years. INTERVENTIONS: Not applicable. MAIN OUTCOMES: Self-reported satisfaction on several indicators that include: health, ability to perform daily activities, oneself, personal relationships, and living conditions. A total score of QOL was calculated using these 5 definitions. RESULTS: The most important indicators for self-reported QOL of persons with SCI were social attitudes and access to health care services, followed by nursing care, access to public spaces, the provision of vocational rehabilitation, transportation, medication, and assistive devices. In general, persons with SCI living in higher-income countries reported a higher QOL than people in lower-income countries, with some exceptions. The top performing country was The Netherlands with an estimated median QOL of 66% (on a 0%-100% scale). CONCLUSIONS: The living situation of people with SCI is highly influenced by the performance of the health system. Measuring and comparing health systems give accountability to a country's citizens, but it also helps to determine areas for improvement.

Examining the complexity of functioning in persons with spinal cord injury attending first rehabilitation in Switzerland using structural equation modelling.

STUDY DESIGN: Cross-sectional. OBJECTIVES: To examine the associations between activities, body structures and functions, and their relationship with aetiology, age and sex in persons with spinal cord injury (SCI) at discharge from first rehabilitation. SETTING: Swiss SCI Cohort Study (SwiSCI). METHODS: The study included 390 participants with newly acquired SCI and the International Classification of Functioning, Disability and Health (ICF) as conceptual frame of reference. Body structures were represented by injury level and severity; body functions by cardiovascular, pulmonary, skin, bowel and urinary functions and pain; mental functions by anxiety, depression, optimism and self-esteem; and activities by independence in performing activities of daily living (ADL). Using structural equation modelling (SEM), indirect effects of body structures and functions on independence in performing ADL through mental functions were tested for each mental function separately. For each structural model, fit was assessed using several indices and differences in aetiology, age and sex groups were explored. RESULTS: The structural model about optimism showed good fit in all indices; the models about anxiety, depression and self-esteem showed conflicting fit indices, respectively. Within all models, effects on independence in performing ADL were mainly direct. Pain showed significant (P < 0.05) indirect effects on independence in performing ADL within the depression, optimism and self-esteem models. The model about anxiety showed differences in aetiology groups. CONCLUSIONS: Using an ICF-based modelling approach, this study presents an attempt towards a more comprehensive understanding of functioning in first rehabilitation of persons with SCI, which might be fundamental for rehabilitation planning.

Correction: Examining the complexity of functioning in persons with spinal cord injury attending first rehabilitation in Switzerland using structural equation modelling.

An amendment to this paper has been published and can be accessed via a link at the top of the paper.

Pain rates in general population for the period 1991-2015 and 10-years prediction: results from a multi-continent age-period-cohort analysis.

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.

Predictors of pain in general ageing populations: results from a multi-country analysis based on ATHLOS harmonized database.

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.

Health, Functioning, and Well-being: Individual and Societal.

As a society we invest an enormous amount of resources in health because we are convinced that health is linked in some way to a person's well-being, and that population health is linked to overall societal welfare. But the nature of this link, and the evidence for it, are more controversial. After exploring current attempts to operationalize well-being in a manner amenable to measurement, in this article we offer a way for securing the link between the provision of health care and individual well-being, and societal welfare by highlighting what matters to people about their health. We argue that it is the lived experience of health and its effect on daily life that matters. This experience is captured by the notion of functioning in the World Health Organization's International Classification of Functioning, Disability and Health. Moreover, viewed as an indicator of health on par with mortality and morbidity, functioning provides the essential bridge that links the provision of health care both to individual well-being and, at the population level, societal welfare.

Rethinking Disability.

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.

Using concept mapping to develop a human rights based indicator framework to assess country efforts to strengthen rehabilitation provision and policy: the Rehabilitation System Diagnosis and Dialogue framework (RESYST).

BACKGROUND: Rehabilitation is crucial for the realization of the right to health and a proper concern of global health. Yet, reliable information to guide rehabilitation service planning is unavailable in many countries in part due to the lack of appropriate indicators. To ensure universal health coverage and meet the central imperative of "leaving no one behind" countries must be able to assess key aspects of rehabilitation policy and provision and monitor how they have discharged their human rights responsibilities towards those most disadvantaged, including people with disability. This article describes the process of developing an expert guided indicator framework to assess governments' efforts and progress in strengthening rehabilitation in line with the Convention on the Rights of Persons with Disabilities. METHODS: A systems methodology - concept mapping - was used to capture, aggregate and confirm the knowledge of diverse stakeholders on measures thought to be useful for monitoring the implementation of the Convention with respect to health related rehabilitation. Fifty-six individuals generated a list of 107 indicators through online brainstorming which were subsequently sorted by 37 experts from the original panel into non overlapping categories. Forty-one participants rated the indicators for importance and feasibility. Multivariate statistical techniques where used to explore patterns and themes in the data and create the indicators' organizing framework which was verified and interpreted by a select number of participants. RESULTS: A concept map of 11 clusters of indicators emerged from the analysis grouped into three broader themes: Governance and Leadership (3 clusters); Service Delivery, Financing and Oversight (6 clusters); and Human Resources (2 clusters). The indicator framework was comprehensive and well aligned with the Convention. On average, there was a moderately positive correlation between importance and feasibility of the indicators (r = .58) with experts prioritizing the indicators contained in the clusters of the Governance and Leadership domain. Two of the most important indicators arose from the Service Delivery, Financing and Oversight domain and reflect the need to monitor unmet needs and barriers in access to rehabilitation. In total, 59 indicators achieved above average score for importance and comprised the two-tiered priority set of indicators. CONCLUSION: Concept mapping was successful in generating a shared model that enables a system's view of the most critical legal, policy and programmatic factors that must be addressed when assessing country efforts to reform, upscale and improve rehabilitation services. The Rehabilitation Systems Diagnosis and Dialogue framework provides a data driven basis for the development of standardized data collection tools to facilitate comparative analysis of rehabilitation systems. Despite agreement on the importance and feasibility of 59 indicators, further research is needed to appraise the applicability and utility of the indicators and secure a realistic assessment of rehabilitation systems.

Describing Functioning in People Living With Spinal Cord Injury in Switzerland: A Graphical Modeling Approach.

OBJECTIVE: To describe functioning in people living with spinal cord injuries (SCI) in Switzerland. DESIGN: Secondary analysis of cross-sectional survey data. SETTING: Community, Switzerland. PARTICIPANTS: Individuals (N=1549) 16 years of age or older with a history of traumatic or nontraumatic SCI and permanently residing in Switzerland. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Functioning was operationalized through 4 domains: (1) impairments in body functions; (2) impairments in mental functions; (3) independence in performing activities; and (4) performance problems in participation. RESULTS: Univariate analysis indicated a high prevalence of problems in 5 areas: (1) housework; (2) climbing stairs; (3) tiredness; (4) spasticity; and (5) chronic pain. Graphical modeling showed a strong association among the four domains of functioning. Moreover, we found that the differences in the dependence structures were significant between the paraplegia SCI population and the tetraplegia SCI population. CONCLUSIONS: This study is a first study in the epidemiology of functioning of people living with SCI in Switzerland. Using univariate and graphical modeling approaches, we proposed an empirical foundation for developing hypotheses on functioning in each domain and category that could inform health systems on people's health needs.

Toward the International Classification of Functioning, Disability and Health (ICF) Rehabilitation Set: A Minimal Generic Set of Domains for Rehabilitation as a Health Strategy.

OBJECTIVE: To develop a comprehensive set of the International Classification of Functioning, Disability and Health (ICF) categories as a minimal standard for reporting and assessing functioning and disability in clinical populations along the continuum of care. The specific aims were to specify the domains of functioning recommended for an ICF Rehabilitation Set and to identify a minimal set of environmental factors (EFs) to be used alongside the ICF Rehabilitation Set when describing disability across individuals and populations with various health conditions. DESIGN: Secondary analysis of existing data sets using regression methods (Random Forests and Group Lasso regression) and expert consultations. SETTING: Along the continuum of care, including acute, early postacute, and long-term and community rehabilitation settings. PARTICIPANTS: Persons (N=9863) with various health conditions participated in primary studies. The number of respondents for whom the dependent variable data were available and used in this analysis was 9264. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: For regression analyses, self-reported general health was used as a dependent variable. The ICF categories from the functioning component and the EF component were used as independent variables for the development of the ICF Rehabilitation Set and the minimal set of EFs, respectively. RESULTS: Thirty ICF categories to be complemented with 12 EFs were identified as relevant to the identified ICF sets. The ICF Rehabilitation Set constitutes of 9 ICF categories from the component body functions and 21 from the component activities and participation. The minimal set of EFs contains 12 categories spanning all chapters of the EF component of the ICF. CONCLUSIONS: The identified sets proposed serve as minimal generic sets of aspects of functioning in clinical populations for reporting data within and across heath conditions, time, clinical settings including rehabilitation, and countries. These sets present a reference framework for harmonizing existing information on disability across general and clinical populations.

Health-related rehabilitation and human rights: analyzing states' obligations under the United Nations Convention on the Rights of Persons with Disabilities.

Globally, disability represents a major challenge for health systems and contributes to the rising demand for rehabilitation care. An extensive body of evidence testifies to the barriers that people with disabilities confront in accessing rehabilitation services and to the enormous impact this has on their lives. The international legal dimension of rehabilitation is underexplored, although access to rehabilitation is a human right enshrined in numerous legal documents, specifically the Convention on the Rights of Persons with Disabilities. However, to date, no study has analyzed the implications of the Convention for Rehabilitation Policy and Organization. This article clarifies states' obligations with respect to health-related rehabilitation for persons with disabilities under the Convention. These obligations relate to the provision of rehabilitation but extend across several key human right commitment areas such as equality and nondiscrimination; progressive realization; international cooperation; participation in policymaking processes; the accessibility, availability, acceptability, and quality of rehabilitation services; privacy and confidentiality; and informed decision making and accountability. To support effective implementation of the Convention, governments need to focus their efforts on all these areas and devise appropriate measures to monitor compliance with human rights principles and standards in rehabilitation policy, service delivery, and organization. This article lays the foundations for a rights-based approach to rehabilitation and offers a framework that may assist in the evaluation of national rehabilitation strategies and the identification of gaps in the implementation of the Convention.

Which environmental factors are associated with lived health when controlling for biological health? - a multilevel analysis.

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.

Developing human rights based indicators to support country monitoring of rehabilitation services and programmes for people with disabilities: a study protocol.

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.