Saturday, 13 May 2017

#ClinicSpeak & #BrainHealth: policy document under attack

Does early diagnosis of MS make a difference? #ClinicSpeak #MSBlog

One of our colleagues came back from a recent meeting where one of the speakers repeatedly criticised our 'Brain Health: Time Matters' policy document for not being evidence-based. The policy document is quite broad and covers several aspects in relation to the MS pathway. Many of the statements are supported by evidence, others by scientific principles and some from evidence outside of MS. How much evidence do you need? When is the evidence sufficient to convince the wider community? Should we wait for >90% acceptance, i.e. when the laggards start adopting the policies, or is 50% acceptance rate sufficient? 

One example from the policy document is about activating the community to improve the time to MS diagnosis. Does having a diagnosis of MS earlier affect MS outcomes? I think the data from the CIS and long-term follow-up studies are clear. When the latest economic impact study of MS in Europe was published and showed that the mean time to MS diagnosis after symptom onset was over 8 years I couldn't quite believe it so I asked you all to complete a short survey. Not surprisingly we got very similar results to Gisela Kobelt study (see below). What is interesting is that so many of you had a delayed diagnosis and the reasons for the delay tell it all.


8 comments:

  1. One of our colleagues criticised our 'Brain Health: Time Matters' policy document for not being evidence-based.......Was it that EAE T cell immunologist:-).

    Surely, it is common sense that is is not OK to let MS ravage someone's brain?

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    1. Since when is common sense actual scientific evidence?

      You do great work but this is a valid criticism.

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    2. MD has a great deal of evidence-based common sense:-)

      The question is what level of evidence will suffice, and for who (pwMS, health care professionals, regulators)? FDA/EMA generally require two positive phase III trials to award a license, so does this mean we'll need MS-STAT III if MS-STAT II is positive? Another 6 years to confirm the result? Or will the evidence of one phase III trial suffice, supported by the available phase II evidence, and clinical judgement (translate that as *common sense* among clinicians, a composite with evidence and experience as main components).

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    3. If it looks like a duck quacks like a duck and swims like a duck...there are still people who will tell you it's a vole.

      I've never seen a gun kill someone but my common sense says if that bullet is coming my way, I better take notice.:-)

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    4. We can see this as obvious as you like in the beasties.

      In humans the data is going to be skewed becaause one year post disease onset on the record, could mean one year or it could be ten or more whilst MS was subclinical or un-noticed or whilst a diagnosis was been missed or not given.

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  2. The term “delay” is very qualitative, a paradigm that will mean different things to everyone who experiences a “delay”. As a UK patient you expect some sort of definitive answer to you woes either within 4 hours or 18 weeks. To a neuro; I assume a delay is when the person has come to harm as they weren’t seen quick enough. The issue seems to be that you can’t seem to decide where “harm” starts.


    I can see why someone would criticise the document but at the same time the critic has obviously never heard the very well versed phrase “I would rather die trying”.

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  3. Can I offer to fly over and show myself to anyone that does not believe in early diagnosis?

    This is a serious offer, I understand that I am just one datapoint.

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    Replies
    1. I suspect there are lots of data points of neuros doing nothing and disability accumulates.

      Delete

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