Saturday, 9 February 2013

Predicting MS disease course using a web-calculator

#MSBlog A new prognostic calculator for MS disease progression. Why is it not open-access?


BACKGROUND AND PURPOSE: The Evidence-Based Decision Support Tool in Multiple Sclerosis (EBDiMS) is the first Web-based prognostic calculator in multiple sclerosis (MS) capable of delivering individualized estimates of disease progression. It has recently been extended to provide long-term predictions based on the data from a large natural history cohort.

METHODS: We compared the predictive accuracy and consistency of EBDiMS with that of 17 neurologists highly specialized in MS.

RESULTS: We show that whilst the predictive accuracy was similar, neurologists showed a significant intra-rater and inter-rater variability.

CONCLUSIONS: Because EBDiMS was consistent, it is of superior utility in a specialist setting. Further field testing of EBDiMS in non-specialist settings, and investigation of its usefulness for counselling patients in treatment decisions, is warranted.

"This tool is very important and will help you, as a person with MS, get an idea of your prognosis. It is a great pity that the new tool is not accessible for all to use. When I went onto the Sylvia Lawry Centre's website to access the tool I was asked to log in! Why? Surely this should be open-access? You can register a protest vote on the poll below."





"I note that the SLC's individual risk calculator is still active. You may want to try it. You Simply enter your baseline details using the website and get a read-out of your predicted course. The database works by pulling out the 30 MSers in the database that are similar to you and calculating their average course. The print-outs below are therefore an average and have wide confidence intervals around the mean or average. I would be interested to get your feedback on the information this calculator provides. Is it helpful to you?"









EDSS 6 = using a walking stick

3 comments:

  1. These tools do not take psychological effects into account which also may play a role - maybe even in what ultimately shows up on an MRI, but certainly with regard to a person's perceived state of well-being. If, due to a tool, I am utterly convinced that in so many year's time I won't be able to walk I may take a deterministic view, feeling that working out regularly doesn't make sense because my fate is sealed anyway etc. Plus new medication may come along - I'm not sure these tools look at what medications people are on. Etc. Tools make sense if they help for diagnosis and selecting treatment options. They don't make sense - and even less so in the hands of the concerned, recently diagnosed or easily panicky - if they mean as much for real life quality as those online horoscopes where you can calculate your hour of death.

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  2. I agree. Part of me wants to know, part of me doesn't. I'm a bit concerned that Prof G presumably thinks that there is no likelihood of our being treated with new drugs which would invalidate the data on this tool.

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  3. I think this tool it is very interesting. It is nice to put some numbers on the likelihood of relapse and EDSS progression in similar placebo treated patients like me. I would like to see an even more advanced tool made from one thousand random MS patients on a placebo with much longer future outcomes like 10 years automatically displayed. Encouraging, and surprising that this is open source.

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