1. Development and validation of the self-reported disability status scale (SRDSS) to estimate EDSS-categories
- Author
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Kaufmann, Marco, Salmen, Anke, Barin, Laura, Puhan, Milo A, Calabrese, Pasquale, Kamm, Christian Philipp, Gobbi, Claudio, Kuhle, Jens, Manjaly, Zina-Mary, Ajdacic-Gross, Vladeta, Schafroth, Sandra, Bottignole, Britta, Ammann, Sabin, Zecca, Chiara, D'Souza, Marcus, von Wyl, Viktor, University of Zurich, and Kaufmann, Marco
- Subjects
2728 Neurology (clinical) ,2808 Neurology ,11549 Institute of Implementation Science in Health Care ,610 Medicine & health ,EDSS ,Registries ,Patient reported outcome ,Self-report ,Proxy measure ,10060 Epidemiology, Biostatistics and Prevention Institute (EBPI) ,360 Social problems & social services - Abstract
Background Clinician-assessed Expanded Disease Status Scale (EDSS) is gold standard in clinical investigations but normally unavailable in population-based, patient-centred MS-studies. Our objective was to develop a self-reported gait measure reflecting EDSS-categories. Methods We developed the self-reported disability status scale (SRDSS) with three categories (≤3.5, 4–6.5, ≥7) based on three mobility-related questions. The SRDSS was determined for 173 persons with MS and validated against clinical EDSS to calculate sensitivity and specificity. Results Accuracy was 88.4% (153 correctly classified) and weighted kappa 0.73 (0.62–0.84). Sensitivity/specificity-pairs were 94.5%/77.8%, 69.0%/94.7% and 100%/98.2% for SRDSS ≤3.5, 4–6.5 and ≥7, respectively. Conclusions Self-reported SRDSS approximates EDSS-categories well and fosters comparability between clinical and population-based studies., Multiple Sclerosis and Related Disorders, 42, ISSN:2211-0356, ISSN:2211-0348
- Published
- 2020
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