BACKGROUND: In developing the PatientsLikeMe online platform for MSers, they 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, they developed the Multiple Sclerosis Rating Scale (MSRS).
METHODS: They 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 MSers, conducted MSer cognitive debriefing, and made minor improvements to form a revised scale (MSRS-R) before deploying a cross-sectional survey to MSers 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 MSers 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, r = .84; MSWS-12, r= .83; NARCOMS mobility question, r = .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.
I used to be a member of PatientsLikeMe (PLM) but I deactivated my account for two reasons:1) According to their site, the MSRS is a rating scale that "measures the impact of MS on your day-to-day life". I don't experience sx every day and the residual sx that I have from my previous attack don't give me trouble. So I saw little point in regularly visiting the PLM site, however I continue to participate in NARCOMS' biannual surveys. You may want to offer your participants the choice of how often they would like to monitor their MS (daily or monthly), so as to get a more balanced picture of your participants. 2) In addition to the MSRS, PLM also uses its forums as a means of monitoring. I would recommend against using forums and instead use surveys to gather further info on your participants. A big reason why I deactivated my PLM account was because of a very ugly incident that transpired between a proponent of "that theory which will not be named" and several other PLM members who didn't share their enthusiasm. The incident culminated in the proponent being banned after they resorted to using racial slurs and making threats against the family members of other PLM members. Even after this individual was banned, I no longer felt safe in sharing my info on PLM and I don't intend ever going back there again.I wish you much success in developing your online portal, Prof G!
Re: "I wish you much success in developing your online portal, Prof G!"The idea is not for MSers to share their information with other MSers, but to use it as a personal resource and to share it with their medical teams.
I agree with Maria. I joined Patients Like Me out of curiosity, but never used it. I never even bothered to deactivate my account.On the other hand, I have been a member of the NARCOMS quarterly survey since my diagnosis 11 years ago. I always complete the questionnaire when I receive a notice.I do this because I recognize the importance of surveys such as NARCOMS and I see the results in research reports in the journal literature.I, too, wish you success in establishing an online portal, but I believe that it's important to lay out the ground rules and also the reasons for establishing it. Otherwise, you will have inconsistent information.I would also encourage readers of your excellent blog to join the NARCOMS survey. Although highly US-centric for obvious reasons, NARCOMS is becoming more international. Liz