The multiple sclerosis rating scale, revised (MSRS-R): development, refinement, and psychometric validation using an online community.
BACKGROUND
In developing the PatientsLikeMe online platform for patients with Multiple Sclerosis (MS), we required a patient-reported assessment of functional status that was easy to complete and identified disability in domains other than walking. Existing measures of functional status were inadequate, clinician-reported, focused on walking, and burdensome to complete. In response, we developed the Multiple Sclerosis Rating Scale (MSRS).


METHODS
We adapted a clinician-rated measure, the Guy's Neurological Disability Scale, to a self-report scale and deployed it to an online community. As part of our validation process we reviewed discussions between patients, conducted patient cognitive debriefing, and made minor improvements to form a revised scale (MSRS-R) before deploying a cross-sectional survey to patients with relapsing-remitting MS (RRMS) on the PatientsLikeMe platform. The survey included MSRS-R and comparator measures: MSIS-29, PDDS, NARCOMS Performance Scales, PRIMUS, and MSWS-12.


RESULTS
In total, 816 RRMS patients responded (19% response rate). The MSRS-R exhibited high internal consistency (Cronbach's alpha = .86). The MSRS-R walking item was highly correlated with alternative walking measures (PDDS, ρ = .84; MSWS-12, ρ = .83; NARCOMS mobility question, ρ = .86). MSRS-R correlated well with comparison instruments and differentiated between known groups by PDDS disease stage and relapse burden in the past two years. Factor analysis suggested a single factor accounting for 51.5% of variance.


CONCLUSIONS
The MSRS-R is a concise measure of MS-related functional disability, and may have advantages for disease measurement over longer and more burdensome instruments that are restricted to a smaller number of domains or measure quality of life. Studies are underway describing the use of the instrument in contexts outside our online platform such as clinical practice or trials. The MSRS-R is released for use under creative commons license.
PatientsLikeMe Inc, 155 Second Street, Cambridge, MA 02141, USA. pwicks@patientslikeme.com
Paul
P
Wicks
Timothy E
TE
Vaughan
Michael P
MP
Massagli
D000328:Adult; D003430:Cross-Sectional Studies; D004185:Disability Evaluation; D005163:Factor Analysis, Statistical; D005260:Female; D006801:Humans; D020407:Internet; D007407:Interviews as Topic; D008131:London; D008297:Male; D008875:Middle Aged; D009103:Multiple Sclerosis / Q000145:classification* / Q000523:psychology* / Q000628:therapy; D020529:Multiple Sclerosis, Relapsing-Remitting / Q000145:classification / Q000523:psychology / Q000628:therapy; D009460:Neurologic Examination; D017063:Outcome Assessment, Health Care / Q000379:methods*; D025341:Principal Component Analysis; D011594:Psychometrics / Q000458:organization & administration / Q000592:standards*; D011788:Quality of Life; D015203:Reproducibility of Results; D012720:Severity of Illness Index