DEVELOPMENT AND VALIDATION OF THE MULTIPLE SCLEROSIS RATING SCALE-REVISED (MSRS-R)
Author(s)
Wicks P, Vaughan TE, Massagli MPPatientsLikeMe, Cambridge, MA, USA
Presentation Documents
OBJECTIVES: PatientsLikeMe is an online health-data sharing community and research platform for patients with chronic and life-changing health conditions. In developing the PatientsLikeMe online platform for patients with Multiple Sclerosis (MS), we required a patient-reported, multi-dimensional assessment of functional status that was easy to complete. Existing measures of functional status were inadequate; clinician-reported, focused on walking, and burdensome to complete. To develop a longitudinal record accessible to patients using the site, 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 online forum discussions between patients, conducted in-person patient cognitive debriefing, and made minor improvements to form a revised scale (MSRS-R). The MSRS-R was deployed as a cross-sectional survey to 4382 patients with relapsing-remitting MS (RRMS) on the PatientsLikeMe platform. The survey included the MSRS-R as well as a range of comparator MS measures: PRIMUS, MSIS-29, PDDS, NARCOMS Performance Scales, and MSWS-12. RESULTS: In total, 816 RRMS patients responded. The MSRS-R exhibited high internal consistency (Cronbach’s alpha = 0.86) and 1-week retest reliability (r = 0.91). The MSRS-R walking item was highly correlated with alternative walking measures (PDDS, r = 0.84; MSWS-12, r= 0.83; NARCOMS mobility question, r = 0.86). The MSRS-R correlated well with comparison instruments, and reliably differentiated between participants by PDDS disease stage, relapse severity, and time since diagnosis. Retrospective scoring of most recent relapse suggested a 3-point increase in MSRS-R might usefully identify relapses. CONCLUSIONS: The MSRS-R is a concise, multi-faceted measure of MS-related functional disability. It may be useful for describing the impact of MS and can support further inquiry into the factors that relate to variation in outcomes among MS patients.
Conference/Value in Health Info
2011-11, ISPOR Europe 2011, Madrid, Spain
Value in Health, Vol. 14, No. 7 (November 2011)
Code
PND45
Disease
Neurological Disorders