Internet-based outcome tool

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Do you think it will helpful knowing your EDSS? #MSBlog #MSResearch

“A web-based EDSS is a small, unfunded, project we have been working on for several years. I had four grants rejected in a row to get this project funded. I eventually decided to run it using an online survey tool with the help of Dr Ruth and a very keen and eager medical student Sara Leddy. The idea was to create a simple online EDSS calculator to allow MSers to get an idea of how disabled, or enabled, they are physically, which would then allow you to interpret prognostic information in relation to your MS.”

“At the moment the EDSS requires your neurologist to examine you and give you a score. Most if not all natural history studies are based on the EDSS (expanded disability status scale) or the earlier version the DSS (disability status scale). This small study shows that the web-based EDSS is a reasonable proxy of the EDSS, so it will give you an estimate of your actual EDSS. Unfortunately, we don’t have an online, real-time, calculator working at present but plan to get one going in the next year of so. I have to find the time to apply for a grant to pay for a developer to write an online App, and smartphone Apps, for the iOS and Android platforms, to run it.”

“I would recommend reading my previous clinic speak posting on the EDSS for a more detailed discussion on the EDSS.”



Leddy et al. A novel internet-based method of capturing outcomes in multiple sclerosis. J Neurol Neurosurg Psychiatry. 2013;84(11):e2.

OBJECTIVE: To validate a novel internet-based method of capturing outcomes in Multiple Sclerosis.

INTRODUCTION: The Expanded Disability Status Scale (EDSS) is the current ‘gold standard’ for monitoring disease in Multiple Sclerosis (MS). Its use is particularly dominant in clinical trials. The EDSS is a physician-based assessment, taking about an hour to perform. Disabled patients may find travelling difficult, and an internet-based EDSS may be useful in remotely capturing information.
METHODS: 81 patients (29 primary progressive, 5 relapsing progressive, and 47 relapsing-remitting; EDSS range 0-8) who were having EDSS as part of clinical trials at the Royal London Hospital were recruited. The group consisted of 49 women and 39 men. Mean age was 41.5 years, (range 18-68). EDSS from previous visit scores ranged from 0-8.5. The mean duration of disease was 6.6 years (range <1-29 years). All patients carried out the web-based survey with minimal assistance. Full EDSS scores were available for 78 patients. Patients were seen by their assessing physician for EDSS, and then completed the online survey. 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.One-way analysis of variance showed EDSS agreement was best at scores <2.5 and >4.5, with >50% patients showing a difference of 0.5-1. Full agreement was observed in 20 patients who had EDSS scores ranging from 0-6; 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. It was 0.50 for patients with an EDSS<4.0 and 0.52 for EDSS>4.0. Functional system (FS) comparison was available for 52 patients. Weighted kappa values for visual, brainstem, pyramidal, cerebellar, sensory, bowel/bladder, and cerebral were 0.26, 0.238, 0.621, 0.532, 0.443, 0.586 and 0.526 respectively. Intra-class coefficient showed the best correlation in the pyramidal and bowel/bladder systems with scores of 0.78 and 0.75 respectively. Poor correlation was found for brainstem and visual FS (ICC 0.19 and 0.25).
CONCLUSION: Internet-based FS and EDSS show good agreement with physician-measured scores. Agreement was better in patients with higher scores, indicating that internet-based assessment may be useful for patients with greater disability. Interestingly, >90% patients self-scored higher in the bowel/bladder FS than the physician-rated scores, highlighting that a web-based assessment may be useful for patient who have difficulty describing personal symptoms. Overall patient 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; not least for those patients who have difficulty travelling to see physicians regularly due to the severity of their disease.

CoI: This study was by TeamG

About the author

Prof G

Professor of Neurology, Barts & The London. MS & Preventive Neurology thinker, blogger, runner, vegetable gardener, husband, father, cook and wine & food lover.

9 comments

  • It's not particularly of any real interest. At EDSS 9 it might be useful to plan your funeral or book your flight to Switzerland. I'm still staggered that as we approached the end of 2013 there's little in the way of articles / discussion about stabilization or repair. An EDSS scoe would be of interest to me if a treatment could off a one point or two reduction. Looks like i got this diseas 50 to early. In all honesty i don't think there is any real scientific understanding of the brain or the diseases which affect it.

  • Congratulations!
    Why can't Pharma help pay for this development. It is in their interest as well.

  • We self-inject, self-catheterise, and will soon be able to self-assess our own EDSS. I'm guessing with some cloud based technology in the near future, we'll be able to self-diagnose. You guys are doing yourselves out of a job. Not sure what Team G's research priorities are, but please include repAir. If you could get me back from 4 to 2 (edss), you would change my life. Please focus on what patients need / want, not just the stuff that gets you academic kudos. Best wishes.

  • > I have to find the time to apply for a grant to pay for a developer to write an online App, and smartphone Apps, for the iOS and Android platforms, to run it.

    Luckily in IT, there are alternatives: If you find one* or more self-motivated developers, they could setup an Open Source project. Nowadays, there are many Open Source projects, e.g http://government.github.com/.

    "Software from the people for the people."

    My proposition:
    1) As a starting point, you could describe the goals of the software. Maybe as a blog posting.
    2) It would help, if interested developers could read the above paper. (Open Access?)

    * I'd like to have more information, in order to see if I can contribute something. I'm a Senior Software Engineer having MS.

  • I think this is an excellent idea. It would make a lot of the research results data easier to understand. It would also help individuals measure how much exercise or other interventions where helping them, or not.

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