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OBJECTIVE: The aim of this study is to assess the physical health in the Finnish Spinal cord injury (SCI) population using the Patient Reported Outcome Measurement Information System (PROMIS®) and make a comparison to the general United States (US) population. Furthermore, the aim is to explore the associations between pain interference, pain intensity, sleep disturbance, and fatigue and physical function. DESIGN: Cross-sectional study. This study is part of the Finnish Spinal Cord Injury (FinSCI) community survey study. SETTING: Community, Finland. PARTICIPANTS: 884 persons with SCI. INTERVENTIONS: Not applicable. OUTCOME MEASURES: Physical health was measured with custom Patient Reported Outcome Measure System (PROMIS®) short forms. RESULTS: Higher age and lesion level indicated more severe physical function impairments. Persons ≥46 years exhibited more pain interference symptoms compared to younger participants. On average, the Finnish SCI population had 1.3 SD lower physical function and 0.9 SD higher pain interference T-scores compared to the US general population (P

Background Little is known about the spectrum of everyday challenges that people with skeletal dysplasia face because of their health and functioning. We aimed to identify factors related to health, functioning and disability in people with skeletal dysplasia, and their challenges with accessibility in order to form a self-reported questionnaire for national data collection. The comprehensive musculoskeletal post-acute core set of the International Classification of Functioning, Disability and Health (ICF) was used as a framework. Methods An iterative, participatory and qualitative process was used to formulate a questionnaire. Items were searched from Patient-Reported Outcomes Measurement Information System and from other self-report instruments, additional items were formulated using ICF linking rules. Expert panels from the target population assessed the face and content validity in thematic interviews. Results The questionnaire demonstrated its relevance, comprehensiveness and feasibility for people with skeletal dysplasia. The ICF linkages showed the contents’ correspondence to the construct. Expert panels added 15 categories and one on chapter level to the core set and confirmed content validity. The final survey covers 86 ICF categories and 173 ICF-linked items that were grouped to 33 questions. Conclusions The content of the questionnaire proved to be sufficiently valid for people with skeletal dysplasia. It can be used to explore their health, functioning, disability and accessibility to develop care and rehabilitation policies, to plan services and to provide information to various parties involved.

Background Skeletal dysplasias are rare disorders often leading to severe short stature. This study aimed to gain new comprehensive information about functioning and equality in people affected by skeletal dysplasia compared to matched controls without skeletal dysplasia. Methods Functioning was assessed by questionnaire, which was formed by operationalizing International Classification of Functioning, Disability and Health (ICF) core set’s categories into the items according to the ICF linking rules, using primarily Patient Reported Outcomes Measurement Information System PROMIS® - items. Results Altogether 80 subjects with skeletal dysplasia and 55 age-, gender- and place of residence -matched controls participated. People with skeletal dysplasia experienced more pain (p p = 0.037) compared to the controls. They had more problems related to musculoskeletal functions and exercise tolerance, difficulties in mobility, used more assistive products and technology and were more affected by climate and seasonal changes (p p p = 0.007). They felt less satisfied with remunerative work (p = 0.003), felt more inequality (p = 0.008), met more negative attitudes of others (p p = 0.022). They used more social and health services and experienced more dissatisfaction with those. Conclusions Our study indicates that skeletal dysplasias restrict functioning extensively and significantly affect daily living. By building accessible environment and improving equal services, functioning could be improved.

The COVID-19 pandemic provides the opportunity to re-think health policies and health systems approaches by the adoption of a biopsychosocial perspective, thus acting on environmental factors so as to increase facilitators and diminish barriers. Specifically, vulnerable people should not face discrimination because of their vulnerability in the allocation of care or life-sustaining treatments. Adoption of biopsychosocial model helps to identify key elements where to act to diminish effects of the pandemics. The pandemic showed us that barriers in health care organization affect mostly those that are vulnerable and can suffer discrimination not because of severity of diseases but just because of their vulnerability, be this age or disability and this can be avoided by biopsychosocial planning in health and social policies. It is possible to avoid the banality of evil, intended as lack of thinking on what we do when we do, by using the emergence of the emergency of COVID-19 as a Trojan horse to achieve some of the sustainable development goals such as universal health coverage and equity in access, thus acting on environmental factors is the key for global health improvement.

Background and purpose: The purpose of the Finnish Spinal Cord Injury Study (FinSCI) is to identify factors related to the health and functioning of people with spinal cord injury, their challenges with accessibility, and how such factors are interconnected. The International Classification of Functioning, Disability and Health (ICF) is used as a structured framework in the study. Design: Protocol of mixed methods study. Results: Study participants were recruited from all 3 spinal cord injury outpatient clinics in Finland. The final target group consists of 1,789 subjects with spinal cord injury. The final questionnaire was formed from 5 different patient-reported instruments. The spinal cord injury-specified instruments are the Spinal Cord Injury Secondary Condition Scale, the Spinal Cord Independence Measure, and the Nottwil Environmental Factors Inventory Short Form. In addition, questions from the following generic instruments were chosen after a selection process: the Patient-Reported Outcomes Measurement Information System, PROM'S (R), and the National Study of Health, Well-being and Service, FinSote. Altogether, the final questionnaire covers 64 ICF categories and consists of 151 ICF-linked questions. Conclusion: The formulated questionnaire covers widely different aspects of health, functioning and accessibility. The questionnaire results and subsequent interviews will help in developing care and rehabilitation policies and services for people with spinal cord injury.

Background The unemployed have lower work ability and poorer health than the employed. This situation deteriorates when unemployment continues. The long-term unemployed often have co-morbidities and face many other challenges. This increases the need for a multidimensional assessment of work ability and functioning in different service settings. In this study, we describe the development and analyse the content validity of the Abilitator, a self-report questionnaire on work ability and functioning for those in a weak labour market position. Methods The Abilitator was developed in 2014–2017. Its construct was assessed by members of academic expert panels (n = 30), practical expert panels of professionals (n = 700) and target group clients (n = 28). The structure and the content of the questionnaire was co-developed in 29 workshops and adjusted twice based on the expert panels’ feedback. The Abilitator was also implemented among target group clients (n = 3360) in different services and projects. During its development the Abilitator was linked to the International Classification of Functioning, Disability and Health (ICF). The content validation process followed the guidelines recommended by the Consensus-based Standards for the selection of health Measurement Instruments (COSMIN) panel. Results The construct of the Abilitator combines the multidimensional and biopsychosocial models of work ability and functioning. It also includes aspects of social inclusion and employability. It evaluates social, psychological, cognitive and physical functioning, and the ability to cope with everyday life. The content of these concepts was validated by the academic and practical expert panels. The Abilitator’s 79 ICF codes covered 57% of the Generic, 77% of the Brief Vocational Rehabilitation, and 8% of the Minimal Environmental ICF Core Sets. When compared with the Work Ability Index (WAI) and the World Health Organization Disability Assessment Schedule (WHODAS 2.0), the direct equivalences of the ICF codes were 36 and 44%, respectively. Conclusion The Abilitator sufficiently comprehensively covers the relevant aspects to enable the assessment of the overall work ability and functioning of the population in a weak labour market position.

Purpose This systematic review analyzed the effectiveness of rehabilitation interventions on the employment and functioning of people with intellectual disabilities (ID), as well as barriers and facilitators of employment. Methods This was a systematic review of quantitative, qualitative, and mixed methods studies. The outcomes were employment, transition to the open labor market and functioning. The review included qualitative studies of employment barriers and facilitators. The population comprised people with ID aged 16–68 years. Peer-reviewed articles published in English between January 1990 and February 2019 were obtained from the databases Cinahl, the Cochrane Library, Embase, Eric, Medic, Medline, OTseeker, Pedro, PsycInfo, PubMed, Socindex, and the Web of Science. We also searched Google Scholar and Base. The modified selection instrument (PIOS: participants, intervention, outcome, and study design) used in the selection of the articles depended on the selection criteria. Results Ten quantitative (one randomized controlled, one concurrently controlled, and eight cohort studies), six qualitative studies, one multimethod study, and 21 case studies met the inclusion criteria. The quantitative studies showed that secondary education increases employment among people with ID when it includes work experience and personal support services. Supported employment also increased employment in the open labor market, which sheltered work did not. The barriers to employment were the use of sheltered work, discrimination in vocational experience, the use of class teaching, and deficient work experience while still at school. The facilitators of employment were one’s own activity, the support of one’s family, job coaching, a well-designed work environment, appreciation of one’s work, support form one’s employer and work organization, knowledge and experience of employment during secondary education, and for entrepreneurs, the use of a support person. Conclusions The employment of people with ID can be improved through secondary education including proper teaching methods and personal support services, the use of supported work, workplace accommodations and support from one’s family and employer. These results can be utilized in the development of rehabilitation, education, and the employment of people with ID, to allow them the opportunity to work in the open labor market and participate in society. Electronic supplementary material The online version of this article (10.1007/s10926-019-09837-2) contains supplementary material, which is available to authorized users.

Background. The Nordic Mobility Related Outcome Evaluation of Assistive Device Intervention (NOMO 1.0) instrument evaluates the effectiveness of mobility devices in assessing mobility-related participation, captured by three scales (Need for Assistance, Frequency, and Ease/Difficulty) and one index (Participation Repertoire). Purpose. This study aimed to investigate a range of psychometric properties of the NOMO 1.0 in a sample of adult powered mobility device (PMD) users. Method. Data collected from PMD users ( N = 248) in Denmark, Finland, and Norway as part of a larger study were analyzed using state-of-the-art statistical methods. Findings. The acceptability and applicability of the NOMO 1.0 items were generally within recommended values. Some floor/ceiling effects were found and the reliability was acceptable for only the Frequency scale. The factor analysis identified one component for the Need for Assistance scale and six components of the Frequency scale. Implications. The NOMO 1.0 should be used for research purposes and not for clinical practice. Better reliability should be established for the Need for Assistance and Ease/Difficulty scales prior to further psychometric testing to establish the validity of the NOMO 1.0.

Objectives: The aim of this study was to develop and test a generic framework to enable international collaboration for producing and sharing results of health technology assessments (HTAs).Methods: Ten international teams constructed the HTA Core Model, dividing information contained in a comprehensive HTA into standardized pieces, the assessment elements. Each element contains a generic issue that is translated into practical research questions while performing an assessment. Elements were described in detail in element cards. Two pilot assessments, designated as Core HTAs were also produced. The Model and Core HTAs were both validated. Guidance on the use of the HTA Core Model was compiled into a Handbook.Results: The HTA Core Model considers health technologies through nine domains. Two applications of the Model were developed, one for medical and surgical interventions and another for diagnostic technologies. Two Core HTAs were produced in parallel with developing the model, providing the first real-life testing of the Model and input for further development. The results of formal validation and public feedback were primarily positive. Development needs were also identified and considered. An online Handbook is available.Conclusions: The HTA Core Model is a novel approach to HTA. It enables effective international production and sharing of HTA results in a structured format. The face validity of the Model was confirmed during the project, but further testing and refining are needed to ensure optimal usefulness and user-friendliness. Core HTAs are intended to serve as a basis for local HTA reports. Core HTAs do not contain recommendations on technology use.

OBJECTIVES. In conducting reviews on the effectiveness of physiotherapy interventions on children with cerebral palsy, the assessment of trials can be hampered by problems in reporting. Therefore, we set out to evaluate trial reporting by using the Consolidated Standards of Reporting Trials (CONSORT) statement recommendations.METHODS. Randomized, controlled trials published in 1990 or later were identified in literature searches for reviews on the effectiveness of physiotherapy interventions on children with cerebral palsy. Two independent reviewers evaluated the trial reporting by using a modified 33-item Consolidated Standards of Reporting Trials checklist.RESULTS. We identified 15 randomized, controlled trials. Almost half (48%) of the applicable items were reported adequately. Inadequate reporting was found in the following items: outcome measures, sample-size determination, details of the sequence generation, allocation concealment and implementation of the randomization, success of assessor blinding, recruitment and follow-up dates, intention-to-treat analysis, precision of the effect size, co-interventions, and adverse events.CONCLUSIONS. Only a small number of sufficiently reported trials were found. Because nearly all items had been described in at least 1 article, high-quality reporting seems feasible. Assessment of trials depends on appropriate reporting, and poor reporting jeopardizes judgments on the clinical implications. Authors of randomized, controlled trials are encouraged to follow the Consolidated Standards of Reporting Trials criteria. There is a clear need to improve the quality of reporting of trials in this field.

Background To assess the effectiveness of physical therapy (PT) interventions on functioning in children with cerebral palsy (CP). Methods A search was made in Medline, Cinahl, PEDro and the Cochrane library for the period 1990 to February 2007. Only randomized controlled trials (RCTs) on PT interventions in children with diagnosed CP were included. Two reviewers independently assessed the methodological quality and extracted the data. The outcomes measured in the trials were classified using the International Classification of Functioning, Disability and Health (ICF). Results Twenty-two trials were identified. Eight intervention categories were distinguished. Four trials were of high methodological quality. Moderate evidence of effectiveness was established for two intervention categories: effectiveness of upper extremity treatments on attained goals and active supination, and of prehensile hand treatment and neurodevelopmental therapy (NDT) or NDT twice a week on developmental status, and of constraint-induced therapy on amount and quality of hand use. Moderate evidence of ineffectiveness was found of strength training on walking speed and stride length. Conflicting evidence was found for strength training on gross motor function. For the other intervention categories the evidence was limited due to low methodological quality and the statistically insignificant results of the studies. Conclusion Due to limitations in methodological quality and variations in population, interventions and outcomes, mostly limited evidence on the effectiveness of most PT interventions is available through RCTs. Moderate evidence was found for some effectiveness of upper extremity training. Well-designed trials are needed especially for focused PT interventions.

Objectives To identify critical issues in performing randomized controlled trials (RCTs) on complex interventions such as physiotherapy in multifaceted disabilities like cerebral palsy (CP); to systematically assess how well trials handled patient characteristics, key components of complex interventions, and outcome assessments; to make suggestions for improving the effectiveness of physiotherapy research. Design and Methods A methodological review. An ongoing metareview served as sampling frame. RCTs on physiotherapy in children with CP published after 1990 were eligible. The main outcome measures were sampling, recruitment, and comparability of groups; defined components of a complex intervention; outcome measures according to the World Health Organization International Classification of Functioning and clinical interpretation of score change. Results Fifty-seven clinical trials were identified, of which 14 RCTs were included. Most studies used simple randomization, complemented by balancing techniques such as matching or stratification. Only three of 14 studies specified concealed allocation. Numerous studies provided sufficient details on components of a complex intervention (e.g., ‘standardized intervention’ (12/14); ‘the active therapeutic ingredient’ (8/15). Overlap of instruments across studies was poor, only instruments on activity endpoints were more homogeneous. The clinical interpretation of observed score changes was mostly missing. Conclusion We found good to fair methodological quality in a considerable number of RCTs on physiotherapy in CP children. Nevertheless, improvement is indicated for certain areas in design and performance of future studies. This review shows that informative RCTs on complex interventions for multifaceted disabilities are feasible.