Author Of 1 Presentation
P1005 - An electronic, unsupervised Patient Reported Expanded Disability Status Scale for Multiple Sclerosis (ID 1921)
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.