Objectives To provide a methodological reference paper for the inception cohort of the Swiss Spinal Cord Injury Cohort Study (SwiSCI), by detailing its methodological features and reporting on participant characteristics, response rates and non-response bias. Design Prospective cohort study starting in 2013 in all 4 specialized rehabilitation centres in Switzerland. Subjects Included are 655 newly diagnosed first rehabilitation patients aged ≥16 years with traumatic or non-traumatic spinal cord injury (TSCI, NTSCI). Methods Descriptive statistics were used to depict participant characteristics and to compare characteristics of responders and non-responders. Logistic regressions were conducted to estimate non-response bias. RESULTS The sample consisted of 69% males, with mean age 53.5 years, 57.9% TSCI, 60.7% paraplegia and 78.8% incomplete SCI. Males and younger persons more often sustained TSCI and more severe SCI, resulting in longer duration of rehabilitation. Complete lesions were more prevalent in TSCI compared to NTSCI. The response rate was 47.5% and study participation was less likely in females, older persons, persons with lower functional independence and those with NTSCI. Conclusion SwiSCI inception cohort data enable the estimation of epidemiological figures of SCI in Switzerland, and prognostic and trajectory modelling of outcomes after SCI to guide policy, service provision and clinical practice. LAY ABSTRACT The inception cohort of the Swiss Spinal Cord Injury Cohort Study (SwiSCI) is a prospective study including newly diagnosed first rehabilitation patients aged over 16 years with traumatic or non-traumatic spinal cord injury (SCI) who received first rehabilitation in a specialized center in Switzerland. This paper describes the methods and the design of the SwiSCI inception cohort and reports on participant characteristics, response rates and differences between respondents and non-respondents. The response rate was 47.5% and 655 patients participated in the study. Of participants, 69.0% were male, mean age was 53.5 years, 57.9% had traumatic SCI, 60.7% paraplegia and 78.8% incomplete SCI. Male subjects and younger persons more often sustained traumatic SCI and more severe SCI, resulting in longer duration of rehabilitation. Complete lesions were more prevalent in traumatic SCI compared with non-traumatic SCI. Females, older persons, persons with lower functional independence and those with non-traumatic SCI were less likely to participate in the study.
To report on the results of the online international consensus process to develop the comprehensive and brief International Classification of Functioning, Disability and Health (ICF) Core Sets for adults with cerebral palsy (CP).METHOD An online iterative decision-making and consensus process involved 25 experts, including clinicians and researchers working with adults with CP, an adult with CP, and the parents of adults with CP from all six regions of the World Health Organization. The most relevant categories were selected from a list of 154 unique second-level candidate categories to develop the ICF Core Sets for adults with CP. This list resulted from evidence gathered during four preparatory studies, that is, a systematic literature review, a qualitative study, an expert survey, and an empirical study. RESULTSThe consensus process resulted in the comprehensive ICF Core Set containing 120 second-level ICF categories: 33 body functions; eight body structures; 50 activities and participation; and 29 environmental factors, from which the most essential categories, 33 in total, were selected for the brief ICF Core Set. For body functions, most of the categories were mental functions and neuromusculoskeletal and movement-related functions. Body structures were mostly related to movement. All the chapters of the activities and participation component were represented, with mobility and self-care as the most frequently covered chapters. For environmental factors, most of the categories addressed products and technology and services, systems, and policies.
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