Tuesday, 20 September 2016

Guidelines for treating MS: a European perspective


The combined EAN (European Academy of Neurology) and ECTRIMS (European Committee for Treatment and Research in Multiple Sclerosis) guidelines for the treatment of MS were launched at ECTRIMS 2016 this September. A mighty endeavor to bring some consistency in what is currently an unregulated environment, with individual variation between different countries. 

To date the EAN has resisted trying to bring in some uniformity into the way MS is manged across  Europe, but the mounting real life treatment evidence seems to have changed their minds?! 

The EAN has joined forces with ECTRIMS to come up with for the first time ever, the MS treatment guidelines. Their recommendations are based on the strength of graded evidence that is out there for MS.

Here are their main topics they plan to cover:

1) Early treatment in CIS (clinically isolated syndrome; single event) patients

2) Treatment in patients with MS (both relapsing and progressive)


3) Monitoring treatment response


4) Stopping and switching treatment strategies


5) Treatment in special situations such as pregnancy


They gave the audience present at ECTRIMS 2016 at Excel London, a taster on some of their general recommendations:


  •   The entire spectrum of disease modifying drugs should only be prescribed in centres where there is an adequate infrastructure to provide:
    • proper monitoring of patients
    • comprehensive assessment
    • detection of side effects and ability to promptly address them.
Not surprisingly this raised a stinging remark from a member of the audience: "let me get this correct, are you trying to take the treatments away from us?!" The chair quickly clarified that the person misunderstood; but, their intention was not to suggest that MS should only be managed at tertiary MS treatment centres! I'm not sure how didactic a regulatory authority, such as NHS England in the UK, will be over such a statement, just in case they adopt it....
  • Patients with CIS
    • Consider interferon or glatiramer acetate for patients with CIS and an abnormal MRI who do not fulfill MS criteria.
This refers to those who have had only a single attack of a demyelinating event and those who have not been diagnosed as clinically definite MS (CDMS). Again the mind boggles as to why 1st line agents that do not take effect quickly should be the main recommendation; particularly when the treatment goal is to achieve early disease remission. This goes against the Swedish registry findings, which demonstrate that the outlook is better if you start with highly active agents first; such as natalizumab (taken for the 1st year) and then swapping to alemtuzumab [my interpretation of the data presented at ECTRIMS 2016], followed by de-escalation to 1st line therapies! May be they didn't get the memo!! Although, having said this early treatment is the way to go.


  •  Monitoring treatment response in MS patients treated with DMDs
    • Consider using MRI combined with clinical measures when evaluating disease evolution in patients treated with disease-modifying drugs.
Given that clinical assessment (e.g. disability assessment, relapse history) do not provide an accurate assessment of treatment response and may take years to be truly certain, is this helpful? See, they quickly contradict this in the statement below:
    • When monitoring response in patients treated with disease-modifying drugs, consider performing a standardised reference brain MRI, usually within six months of treatment onset and compare it with a further brain MRI performed typically 12 months after starting treatment. Adjust the timing of both MRIs, taking into account:
      • The drug's mechanism of action (especially the speed of action)
      • Disease activity
Moreover, I wonder how many centres around the world have the resources to implement this? (let me think in my four clinics/week, I have x many PwMS, ~80% of whom are currently on DMTs....)

The EAN/ECTRIMS guidelines are expected to be published next year, but I predict that there would be lots of questions from reviewers and may even be delayed until the following year! 

Having seen these early attempts from Europe, the rest of the World is probably relieved that their neuros also haven't got into their heads to create something similar in their respective countries. 
Don't get me wrong, if you are brave enough to start, you will! 

I suppose the key is in the phrasing, I wonder how many of you spotted "consider performing" in the consensus statements presented above!

CoI: none.

2 comments:

  1. lol i stopped listening to neuros in relation to timing etc of MRIs. Their opinions on timing etc, more often then not, are not followed by the public hospital MRIs departments as they are overbooked. Now we dictate what MRIs we would like and where and when and seek the neuro's views on the course of action.

    We also don't listen too much about the neuro's views on the progression of my partner's MS. My partner lives with MS and neuros perform the EDSS assessment 6 monthly... instead, now we listen to my partner's views on the progression of her MS and the EDSS assessment is only used as a checking tool.

    All in all, the care that my partner now receives in Australia includes the ability to have an MRI when she chooses (with no more than a week or two wait) and the ability to have a formal EDSS assessment almost on demand (ie. she demands the neuro appointment lol).

    It took us about a year or so from diagnosis to figure out how the system works and how to get what she needs from it.

    ReplyDelete
    Replies
    1. This is on the private system? The UK private system doesn't sustain long-term conditions and on speaking to a US colleague of mine, the tier private system is also starting throw up several hoops to jump through for eligibility.

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