Marco Kaufmann1, Anke Salmen2, Laura Barin3, Milo Alan Puhan4, Pasquale Calabrese5, Christian Philipp Kamm6, Claudio Gobbi7, Jens Kuhle8, Zina-Mary Manjaly9, Vladeta Ajdacic-Gross10, Sandra Schafroth11, Britta Bottignole12, Sabin Ammann13, Chiara Zecca14, Marcus D'Souza15, Viktor von Wyl16. 1. Epidemiology, Biostatistics and Prevention Institute, University of Zurich, Zurich, Switzerland. Electronic address: marco.kaufmann@uzh.ch. 2. Department of Neurology, Inselspital, Bern University Hospital and University of Bern, Bern, Switzerland. Electronic address: anke.salmen@insel.ch. 3. Epidemiology, Biostatistics and Prevention Institute, University of Zurich, Zurich, Switzerland; FBK-IRVAPP, Research Institute for the Evaluation of Public Policies, Bruno Kessler Foundation, Trento, Italy. Electronic address: laura.barin@gmail.com. 4. Epidemiology, Biostatistics and Prevention Institute, University of Zurich, Zurich, Switzerland. Electronic address: miloalan.puhan@uzh.ch. 5. Division of Molecular and Cognitive Neuroscience, University of Basel, Basel, Switzerland. Electronic address: pasquale.calabrese@unibas.ch. 6. Department of Neurology, Inselspital, Bern University Hospital and University of Bern, Bern, Switzerland; Neurocentre, Luzerner Kantonsspital, Luzern, Switzerland. Electronic address: christian.kamm@luks.ch. 7. Faculty of biomedical Sciences, Università della Svizzera Italiana (USI), Lugano, Switzerland; Department of Neurology, Multiple Sclerosis Center (MSC), Neurocenter of Southern Switzerland, Lugano, Switzerland. Electronic address: Claudio.Gobbi@eoc.ch. 8. Neurologic Clinic and Policlinic, University Hospital and University of Basel, Departments of Medicine, Biomedicine and Clinical Research, Basel, Switzerland. Electronic address: Jens.Kuhle@usb.ch. 9. Department of Neurology, Schulthess Clinic, Zürich, Switzerland; Department of Health Sciences and Technology, ETH Zurich, Zürich, Switzerland. Electronic address: Zina-Mary.Manjaly@kws.ch. 10. Epidemiology, Biostatistics and Prevention Institute, University of Zurich, Zurich, Switzerland. Electronic address: vajdacic@dgsp.uzh.ch. 11. Epidemiology, Biostatistics and Prevention Institute, University of Zurich, Zurich, Switzerland. Electronic address: sandra.schafroth2@uzh.ch. 12. Epidemiology, Biostatistics and Prevention Institute, University of Zurich, Zurich, Switzerland. Electronic address: b.bottignole@neurozentrumbellevue.ch. 13. Epidemiology, Biostatistics and Prevention Institute, University of Zurich, Zurich, Switzerland. Electronic address: sabin.ammann@uzh.ch. 14. Faculty of biomedical Sciences, Università della Svizzera Italiana (USI), Lugano, Switzerland; Department of Neurology, Multiple Sclerosis Center (MSC), Neurocenter of Southern Switzerland, Lugano, Switzerland. Electronic address: Chiara.Zecca@eoc.ch. 15. Neurologic Clinic and Policlinic, University Hospital and University of Basel, Departments of Medicine, Biomedicine and Clinical Research, Basel, Switzerland. Electronic address: marcus.dsouza@usb.ch. 16. Epidemiology, Biostatistics and Prevention Institute, University of Zurich, Zurich, Switzerland. Electronic address: viktor.vonwyl@uzh.ch.
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.
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.
Authors: Andrew R Romeo; William M Rowles; Erica S Schleimer; Patrick Barba; Wan-Yu Hsu; Refujia Gomez; Adam Santaniello; Chao Zhao; Jennifer R Pearce; J B Jones; Bruce C Cree; Stephen L Hauser; Jeffrey M Gelfand; Walter F Stewart; Douglas S Goodin; Riley M Bove Journal: Mult Scler Date: 2020-11-25 Impact factor: 5.855
Authors: Vladeta Ajdacic-Gross; Nina Steinemann; Gábor Horváth; Stephanie Rodgers; Marco Kaufmann; Yanhua Xu; Christian P Kamm; Jürg Kesselring; Zina-Mary Manjaly; Chiara Zecca; Pasquale Calabrese; Milo A Puhan; Viktor von Wyl Journal: Front Neurol Date: 2021-07-06 Impact factor: 4.003