University of California San Francisco
Weill Institute for Neurosciences, Department of Neurology

Author Of 1 Presentation

Patient-Reported Outcomes and Quality of Life Poster Presentation

P1005 - An electronic, unsupervised Patient Reported Expanded Disability Status Scale for Multiple Sclerosis (ID 1921)

Speakers
Presentation Number
P1005
Presentation Topic
Patient-Reported Outcomes and Quality of Life

Abstract

Background

In persons with multiple sclerosis (MS), the Expanded Disability Status Scale (EDSS) is the criterion standard for assessing disability, but its in-person nature constrains patient participation in research and clinical assessments.

Objectives

To develop and validate a scalable, electronic, unsupervised patient-reported EDSS (ePR-EDSS) that would capture MS-related disability across the spectrum of severity.

Methods

We enrolled 136 adult MS patients, split into a preliminary testing Cohort 1 (n=50), and a validation Cohort 2 (n=86), which was evenly distributed across EDSS groups. Each patient completed an ePR-EDSS either immediately before or after a MS clinician’s Neurostatus EDSS (NS-EDSS) evaluation. The final ePR-EDSS version includes 23 questions, takes between 7-12 minutes to complete (based on time measured for Cohort 2 participants), and can be accessed at https://openmsbioscreen.ucsf.edu/predss/about.

Results

In Cohort 2, mean age was 50.6 years (range 26-80) and median EDSS was 3.5 (IQR 1.5, 5.5). The ePR-EDSS and EDSS agreed within 1-point for 86% of examinations; kappa for agreement within 1-point was 0.85 (p<0.001). The correlation coefficient between the two measures was 0.91 (<0.001). For individual functional systems, complete agreement was highest for the brainstem score (55.8%) and lowest for the sensory score (31.4%). In sensitivity analyses adjusted for NS-EDSS, the absolute difference between ePR-EDSS and NS-EDSS was not significantly related to age, sex, disease duration, years of education, or the timepoint at which the ePR-EDSS tool was assessed (before/after neurological exam).

Conclusions

The ePR-EDSS is unique compared to other published tools - it can be accessed and performed by the patient without any supervision, is freely and openly available, has built-in logic to calculate functional system and total scores, and is validated over a wide NS-EDSS range. It demonstrated high correlation with NS-EDSS, with good agreement even at lower EDSS levels. For clinical care, the ePR-EDSS could enable the longitudinal monitoring of a patient’s disability. For research, it provides a valid and rapid measure across the entire spectrum of disability and permits broader participation with fewer in-person assessments.

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