Results from an unsupervised, electronic patient-reported (ePR) Expanded Disability Status Scale (EDSS) highly correlated with the standard EDSS in patients with multiple sclerosis (MS), suggesting that the ePR-EDSS could be a reliable tool to assess disability in MS, according to study findings published in Multiple Sclerosis.

The EDSS is standard for evaluating disability in patients with MS, however its in-person requirement limits patient participation. Study researchers sought to develop an ePR-EDSS that captured MS-related disability across the severity spectrum.

This study recruited patients with MS (n=136; age, 18-30 years) from either the University of California San Francisco (UCSF) longitudinal Expression Proteomics Imaging Clinical (EPIC) study or the UCSF Multiple Sclerosis and Neuroinflammation Center. Participants were divided into a preliminary testing cohort (n=50) and a validation cohort (n=86) and randomly completed an ePR-EDSS either immediately before or following an MS clinician’s Neurostatus-EDSS assessment.

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The mean age in the overall study population was 50.4 years and ranged between 26 and 80 years. Almost all (91.2%) of 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 testing cohort regarding agreement between the ePR-EDSS and Neurostatus-EDSS. There was agreement between the ePR-EDSS and Neurostatus-EDSS within 1 point for approximately 86% of examinations. The kappa statistic for agreement within 1 point was 0.85 (P <.001), and the Spearman’s rank correlation coefficient for the overall scores was 0.91 (P <.001).

According to the study researchers, a limitation in the development as well as assessment of the ePR-EDSS was the selection of a convenience sample rather than a population-based cohort. Additionally, the lack of racial and ethnic diversity in the cohort limited the generalizability of results.

The study researchers concluded that a “valid PR-EDSS measures” may be a better alternative for disease clinical research as it may “not only save time but also allow in-person encounters to focus on counseling and shared decision-making and improve, thereby, the quality of clinical care that our MS patients receive.”

Disclosure: Several study authors declared affiliations with the pharmaceutical industry. Please see the original reference for a full list of authors’ disclosures.


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