The multiple sclerosis rating scale, revised (MSRS-R): development, refinement, and psychometric validation using an...

Area of Science:

• Neurology
• Patient-Reported Outcomes
• Health Informatics

Background:

• Existing Multiple Sclerosis (MS) functional status measures were inadequate for the PatientsLikeMe online platform.
• Clinician-reported, walking-focused, and burdensome measures limited patient assessment.
• A patient-reported functional status assessment was needed for broader disability domains.

Purpose of the Study:

• To develop and validate a patient-reported functional status scale for Multiple Sclerosis (MS).
• To create a concise and easy-to-complete measure for the PatientsLikeMe online platform.
• To assess disability in domains beyond walking for MS patients.

Main Methods:

• Adapted the clinician-rated Guy's Neurological Disability Scale into a self-report format.
• Validated the revised scale (MSRS-R) through patient discussions and cognitive debriefing.
• Deployed a cross-sectional survey to relapsing-remitting MS (RRMS) patients, including MSRS-R and comparator instruments.

Main Results:

• 816 RRMS patients responded, with the MSRS-R showing high internal consistency (Cronbach's alpha = .86).
• The MSRS-R walking item strongly correlated with other walking measures (PDDS, MSWS-12).
• The MSRS-R correlated well with comparator instruments and differentiated known groups by disease stage and relapse history.

Conclusions:

• The MSRS-R is a concise and effective measure of MS-related functional disability.
• It offers potential advantages over longer, more burdensome, or domain-restricted instruments.
• The MSRS-R is available for use under a creative commons license for broader application.