Online MS severity calculator

Hughes et al. MS Curves: a new online tool for assessing MS severity using the MSBase Registry. ECTRIMS 2012.

Background: The wide heterogeneity in disability for MSers creates a challenge when gauging disease severity. The utility of EDSS ranking at given disease durations, as originally used to devise the MS Severity Score (MSSS), was developed to assess MS severity in the MSBase dataset. This presentation reports the development of a new online tool, available free to all neurologists, on the MSBase platform, which allows comparison of an individual’s disease severity with those with the same disease duration. 

“Pity MSers can’t use this tool as well?”

Methods: The MSBase registry is a large international database which tracks long-term outcomes in MS. Using this data, the investigators’ created a web-based tool to delineate disease-duration dependent disability ranks in ‘real-time’, for cases of relapse-onset or primary progressive MS in their dataset. Manually inputting an EDSS score for a disease duration gives a disability rank for that individual (as a median percentile displayed graphically), as compared to cases in the MSBase dataset of >120,000 EDSS scores in 19,500 individuals. Additionally, entering serial EDSS scores allows the user to chart relative disease progression over time. Although they do not advocate basing treatment decisions on the output of this tool, a response to a drug may be reflected in the disease course pattern. 

Results: In their dataset, median time to EDSS 3.5 was 20 years after MS onset in the ‘relapse-onset’ subgroup. Relapse-onset MSers who reached an EDSS of 6 at 15 years duration reflected those with the most aggressive disease (87th percentile). They have utilised this tool to compare MS severity in the MSBase dataset with published data from the London, Ontario cohort. In their dataset, those with ‘progressive from onset’ MS reached EDSS 6 at a median of 15 years. This differs from the London, Ontario cohort, in which median time to DSS 6 was 4.51 years for the progressive from onset group or around 8 years in their more recent study of primary progressive MS. 

Conclusion: The clinical course of MS is likely to change in coming years, with improvements in outcomes anticipated with the expansion of therapeutic options. This online tool produces an instant comparison of MS severity for an individual MSer using a regularly-updated international cohort of MSers. The investigators’ encourage MS neurologists to use this tool to assess an individual’s MS severity and delineate disease progression over time.

“Great idea! Big downside is that it does not empower MSers to use the tool without having their neurologist examine them to determine their EDSS! Hopefully, this state of affairs will change in the future when we move away from the EDSS to PROMS (patient or MSer related outcome measures), to measure MS-related disability.”

8 thoughts on “Online MS severity calculator”

  1. Agreed, it seems a useful tool but as you say, leaves PwMS unable to use it without the input of their neurologist. Doesn't really do anything to empower people, does it? Kind of leaves PwMS being 'done to' like the old days

  2. I have problems with the standard Kurtzke EDSS rankings. About 3 months ago, at my last appointment with my neurologist I asked him to actually work out my EDSS score. He worked it out at 3.5, which I have to say I agree with apart from one major difference. There is criticism from some about the EDSS having too much of a focus on walking ability in its higher numbers. I believe that the walking ability part of it should be separated out and assessed independently of the other parts. I've already noted that I agree with the 3.5 on my assessment in relation to the functional system and scores it uses, BUT I can barely walk 100 or 150 metres without rest as my fatigue is appalling and leg coordination is rather poor. Thus my "official" 3.5 score is in many ways a meaningless number, as it does not truly reflect my level of functioning. "Description" wise 4.5, 5.0 and 5.5 are all far closer to the reality of my daily life as far as the impact of my MS goes.

    1. My problem with the EDSS is that according to it (and normal evoked potentials) I have no EDSS for 15 years, 25 if you count my CIS event. But isn't that simple and I have many lesions on MRI, however I'm just told to continue doing 'whatever I'm doing' by the neurologists I see. Which is a combination of exercise, meditation and some 'alternative' meds. Not much choice when the DMTs I've tried to access are not available for me. I'm hoping I will be able to get BG-12 when it becomes available but I'm not holding my breath.

    2. The EDSS is not really fit for purpose as a modern outcome measure but the regulators hang on to this outcome.One problem is that it can be rater dependent.

    3. A doctor would need to be with me for a week to see my disability. I may be able to do something in the morning and struggle to do the same thing an hour later. How can anyone judge my level of disability in a half hour examination? When I fall for no reason other than I'm standing, how is this measured? When I constantly drop things, does anyone see it? When I'm constantly in the toilet, does anyone see I'm not where I should be? An outdated system certainly unfit for purpose.

    4. Dear MouseDoctor, let's call a spade a spade, EDSS is totally out of date and can be used to evaluate progressive MS, but not RRMS. When the disease silently progresses on MRI the EDSS stands still, when it gets too late to treat with DMTs (SPMS) – then EDSS rockets. What good is that?

    5. Exactly 11.04am and 12.22 pm, it is flipping useless for me. Even spending a month with me wouldn't make any difference to my zero EDSS. But I do have active MS, and that is far from benign. Stupid word that I don't think can apply to MS (of any description) but MS specialist neurologists treat my MS like it's a bad case of flu. Much of this is because of the EDSS. But I don't want the MS to progress to the point where it would be useful, so I hope I can get BG-12!

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