A web-based method for tracking progression

Finally our web-based EDSS calculator sees the light of day. #MSBlog #MSResearch

Epub: Leddy S, Hadavi S, McCarren A, Giovannoni G, Dobson R. Validating a novel web-based method to capture disease progression outcomes in multiple sclerosis. J Neurol. 2013 Jun 27.

Background: The Expanded Disability Status Scale (EDSS) is the current 'gold standard' for monitoring disease severity in multiple sclerosis (MS). The EDSS is a physician-based assessment. A MSer-related surrogate for the EDSS may be useful in remotely capturing information. 

Methods: Eighty-one MSers (EDSS range 0-8) having EDSS as part of clinical trials were recruited. All MSers carried out the web-based survey with minimal assistance. Full EDSS scores were available for 78 MSers. The EDSS scores were compared to those generated by the online survey using analysis of variance, matched pair test, Pearson's coefficient, weighted kappa coefficient, and the intra-class correlation coefficient. 

Results: The internet-based EDSS scores showed good correlation with the physician-measured assessment (Pearson's coefficient = 0.85). Weighted kappa for full agreement was 0.647. Full agreement was observed in 20 MSers who had EDSS scores ranging from 0 to 6; many of those with 100 % agreement had scores of 5.5-6 (n = 8).The intra-class coefficient was 0.844 overall for all cases. Internet-based FS and EDSS show good agreement with physician-measured scores. Agreement was better in MSers with higher scores. 

Conclusions: Overall MSer satisfaction with the web-based assessment was high. An internet-based assessment tool is likely to prove an invaluable tool in the long-term monitoring in MS.

"This is an idea I have had brewing for close to 7 years and has taken this long to come to fruition. Why is it important? Firtsly, it will allow MSers to access to a proxy of their try EDSS so that they can consume information about their own disease and track their own disease. Secondly, the web-EDSS can now be included in natural history studies and allow us to monitor the impact of MS without having to examine MSers every 3, 6 or 12 months. The web-EDSS can be included in clinical trials as a potential outcome measure. When will it go live? As soon as I have the time to learn how to write a web-based or smart phone App myself or have the money to employ somebody to do that for me." 

CoI: This study was performed by members of Team G

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