학술논문

An electronic, unsupervised patient-reported Expanded Disability Status Scale for multiple sclerosis.
Document Type
article
Source
Multiple sclerosis (Houndmills, Basingstoke, England). 27(9)
Subject
Humans
Multiple Sclerosis
Disability Evaluation
Electronics
Adult
Aged
Aged
80 and over
Middle Aged
Patient Reported Outcome Measures
Multiple sclerosis
disability
eHealth
patient-reported outcome measures
Autoimmune Disease
Neurosciences
Brain Disorders
Clinical Research
Neurodegenerative
7.1 Individual care needs
Management of diseases and conditions
Neurological
Clinical Sciences
Neurology & Neurosurgery
Language
Abstract
BackgroundIn 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.ObjectiveThe aim of this study was to develop and validate a scalable, electronic, unsupervised patient-reported EDSS (ePR-EDSS) that would capture MS-related disability across the spectrum of severity.MethodsWe 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 evaluation.ResultsIn Cohort 2, mean age was 50.6 years (range = 26-80) and median EDSS was 3.5 (interquartile range (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