The multiple sclerosis rating scale, revised (MSRS-R): Development, refinement, and psychometric validation using an online community

Health and Quality of Life Outcomes

Michael P Massagli¹  Timothy E Vaughan¹  Paul Wicks¹ 

[1] PatientsLikeMe Inc, 155 Second Street, Cambridge, MA 02141, USA

关键词: Internet research;    Online research;    MS relapse;    Disability;    Patient-reported outcomes;    Multiple sclerosis;   

Others  :  1164685
DOI  :  10.1186/1477-7525-10-70

 received in 2011-09-22, accepted in 2012-06-04,  发布年份 2012

【 摘 要 】

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.

【 授权许可】

   
2012 Wicks et al.; licensee BioMed Central Ltd.

【 图 表 】

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Figure 2.

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