Digital EDSS with affected person report is strongly correlated to straightforward EDSS for incapacity evaluation in MS

The results of an unattended, electronic, patient-reported (ePR) Expanded Disability Status Scale (EDSS) strongly correlated with the standard EDSS in patients with multiple sclerosis (MS), suggesting that the ePR-EDSS is a reliable tool for assessment Disability in MS could be according to study results published in Multiple Sclerosis.

The EDSS is a standard for disability assessment in patients with MS, but its personal requirement limits patient participation. The study’s researchers wanted to develop an ePR-EDSS that would capture MS-related disabilities across the range of severity levels.

This study enrolled patients with MS (n = 136; ages 18-30 years) either from the University of California at San Francisco’s (UCSF) Longitudinal Expression Proteomics Imaging Clinical (EPIC) study or from the UCSF Center for Multiple Sclerosis and Neuroinflammation. Participants were divided into a preliminary test cohort (n = 50) and a validation cohort (n = 86) and randomly completed an ePR-EDSS either immediately before or after an MS clinician’s neurostatus EDSS assessment.

The mean age in the entire study population was 50.4 years and ranged from 26 to 80 years. Almost all (91.2%) of the participants were Caucasian-American. The mean duration of MS was 15.9 years and the median neurostatus EDSS was 2.8.

The validation cohort outperformed the test cohort in terms of the agreement between ePR-EDSS and Neurostatus-EDSS. Approximately 86% of the examinations showed a match between ePR-EDSS and Neurostatus-EDSS within 1 point. The kappa statistic for within 1 point agreement was 0.85 (P <0.001) and the Spearman rank correlation coefficient for the total score was 0.91 (P <0.001).

According to the researchers of the study, one limitation in the development and evaluation of the ePR-EDSS was the selection of a convenience sample instead of a population-based cohort. In addition, the lack of racial and ethnic diversity in the cohort limited the generalizability of the results.

The study’s researchers came to the conclusion that a “valid PR-EDSS measure” may be a better alternative for clinical disease research because it “not only saves time, but also enables face-to-face meetings, advice and mutual decision-making focus and thereby improve the quality of clinical care our MS patients receive. ”

Disclosure: Several authors of the study have stated that they are part of the pharmaceutical industry. For a full list of the authors’ information, see the original reference.


Romeo AR, Rowles WM, Schleimer ES et al. An electronic, unsupervised, patient-reported expanded disability status scale for multiple sclerosis. Published online November 25, 2020. Mult Scler. doi: 10.1177 / 1352458520968814

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