Electronic Patient-Reported EDSS Highly Correlates With Standard EDSS for Disability Assessment in MS

Healthy neurons and nerve damage in multiple sclerosis. Illustration of damage (inset, right) to nerve cells caused by the degenerative disease multiple sclerosis. Healthy neurons are shown at left. Immune system cells (microglia, red) have attacked the nerve cell sheaths (myelin), resulting in damaged myelin and disturbed signalling function between the nerves cells (neurons, blue). Multiple sclerosis is a progressive disorder that can cause tingling, speech disorders, lack of coordination, paralysis and death. The microglia cells attack the oligodendrocytes that form the insulating myelin sheath around neuron axons, leading to the destruction of the myelin sheath.
An electronic, unsupervised, patient-reported EDSS to assess disability in multiple sclerosis offers promise in clinical research and care for this population.

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.

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