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  1. Post MW, Reinhardt JD, Avellanet M, Escorpizo R, Engkasan JP, Schwegler U, et al.
    Arch Phys Med Rehabil, 2020 12;101(12):2157-2166.
    PMID: 32673653 DOI: 10.1016/j.apmr.2020.05.027
    OBJECTIVES: To describe the employment situation of individuals with spinal cord injury (SCI) in 22 countries participating in the International Spinal Cord Injury community survey, to compare observed and predicted employment rates, to estimate gaps in employment rates among people with SCI compared with the general population, and to study differences in employment between men and women.

    DESIGN: Cross-sectional survey.

    SETTING: Community.

    PARTICIPANTS: People of employable age (N=9875; 18-64 y) with traumatic or non-traumatic SCI (including cauda equina syndrome) who were at least 18 years of age at the time of the survey, living in the community, and able to respond to one of the available language versions of the questionnaire.

    INTERVENTIONS: Not applicable MAIN OUTCOME MEASURES: The observed employment rate was defined as performing paid work for at least 1 hour a week, and predicted employment rate was adjusted for sample composition from mixed logistic regression analysis.

    RESULTS: A total of 9875 participants were included (165-1174 per country). Considerable differences in sample composition were found. The observed worldwide employment rate was 38%. A wide variation was found across countries, ranging from 10.3% to 61.4%. Some countries showed substantially higher or lower employment rates than predicted based on the composition of their sample. Gaps between the observed employment rates among participants with SCI and the general population ranged from 14.8% to 54.8%. On average, employment rates were slightly higher among men compared with women, but with large variation across countries. Employment gaps, however, were smaller among women for most countries.

    CONCLUSIONS: This first worldwide survey among people with SCI shows an average employment rate of 38%. Differences between observed and predicted employment rates across countries point at country-specific factors that warrant further investigation. Gaps with employment rates in the general population were considerable and call for actions for more inclusive labor market policies in most of the countries investigated.

  2. Bickenbach J, Batistella L, Gutenbrunner C, Middleton J, Post MW, InSCI, et al.
    Arch Phys Med Rehabil, 2020 12;101(12):2227-2232.
    PMID: 32663478 DOI: 10.1016/j.apmr.2020.06.011
    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.
  3. Ehrmann C, Reinhardt JD, Joseph C, Hasnan N, Perrouin-Verbe B, Tederko P, et al.
    Arch Phys Med Rehabil, 2020 12;101(12):2112-2143.
    PMID: 32980339 DOI: 10.1016/j.apmr.2020.09.374
    OBJECTIVE: To provide prevalence estimates for problems in functioning of community-dwelling persons with spinal cord injury (SCI) and to examine associations between various areas of functioning with the purpose of supporting countries in identifying targets for interventions.

    DESIGN: Cross-sectional survey.

    SETTING: Community, 22 countries including all World Health Organization regions.

    PARTICIPANTS: Persons (N=12,591) with traumatic or nontraumatic SCI aged 18 years or older.

    INTERVENTIONS: Not applicable.

    MAIN OUTCOME MEASURES: We estimated the prevalence of problems in 53 areas of functioning from the Brief International Classification of Functioning, Disability and Health (ICF) core set for SCI, long-term context, or ICF rehabilitation set covering 4 domains: impairments in body functions, impairments in mental functions, independence in performing activities, and restrictions in participation. Associations between areas of functioning were identified and visualized using conditional independence graphs.

    RESULTS: Participants had a median age of 52 years, 73% were male, and 63% had paraplegia. Feeling tired, bowel dysfunction, sexual functions, spasticity, pain, carrying out daily routine, doing housework, getting up off the floor from lying on the back, pushing open a heavy door, and standing unsupported had the highest prevalence of problems (>70%). Clustering of associations within the 4 functioning domains was found, with the highest numbers of associations within impairments in mental functions. For the whole International Spinal Cord Injury sample, areas with the highest numbers of associations were circulatory problems, transferring bed-wheelchair, and toileting, while for the World Health Organization European and Western Pacific regions, these were dressing upper body, transferring bed-wheelchair, handling stress, feeling downhearted and depressed, and feeling happy.

    CONCLUSIONS: In each domain of functioning, high prevalence of problems and high connectivity of areas of functioning were identified. The understanding of problems and the identification of potential targets for intervention can inform decision makers at all levels of the health system aiming to improve the situation of people living with SCI.

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