Antworte die Frage-Answer der Question

A

If you are interested in the answers to the questions from the MSTCG, which were mainly German-speaking Neuros read on it is open access

Wiendl, H., Gold, R., Zipp, F. et al. Multiple sclerosis therapy consensus group (MSTCG): answers to the discussion questions. Neurol. Res. Pract. 3, 44 (2021). https://doi.org/10.1186/s42466-021-00140-1

Question 1: when should disease-modifying immunotherapy be initiated? Before or after the onset of disability? Already with CIS (e.g., isolated optic neuritis)?

Question 2: which disease-modifying therapy should be selected when? Should a less potent and low-risk therapy initially be selected for all patients, or should some patients immediately receive a high-efficacy therapy with a higher risk profile and requiring more complex monitoring? To be considered in this context: escalation in three stages versus individually adjusted escalation

Question 3: when should the immunotherapy be terminated? Should the therapy generally be terminated after a few [5] years, or is long-term and sometimes permanent therapy feasible? To be considered in this context: the problem of disease reactivation/rebound

Question 4: how strongly should aspects specified in the official therapy approval be reflected in a treatment recommendation? To be considered in this context: is the equivalent recommendation for rituximab (off-label use) and ocrelizumab as approved B-cell-depleting therapy (on-label) appropriate?

If we could herd cats I wonder what the Engrish-spreaking neuro view would be

Was würder ProfK sagen?

Disclaimer: Please note that the opinions expressed here are those of the author and do not reflect the positions of the Barts and The London School of Medicine and Dentistry nor Barts Health NHS Trust or Queen Mary Univeristy of London.

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MouseDoctor

13 comments

  • In the UK, how much ‘freedom’ does the NHS give to take into account patient’s wishes. I mean, what if the patient is not in the high-risk group for active MS, but still prefers to take an effective IRT such as cladribine or alemtuzumab?
    How about in other countries?

  • You should mention the context in which these recommendations were published.
    Apparently, there was a complete breakdown in the discussions around the updated guidelines for the treatment of MS provided by the German Neurological Society.

    The intention is usually to create a consensus between academics, practitioners and patient repräsentatives but apparently there was a strong fraction which wanted to reinforce strict adherence to the escalation approach and strictly limit access to therapies based on potential side-effects. The authors here didn’t go along with that and decided to publish their alternative guidelines…

    Comes across as if our familiar German Neuros have turned into heretics geared against their own National Society… 🙂

    Would be great if someone with more inside knowledge could add context to this academic soap opera..

    • > there was a strong fraction which wanted to reinforce strict adherence to the escalation approach and strictly limit access to therapies based on potential side-effects.
      First against the wall when the revolution comes, etc. etc.

      • Do I sense a hint of lightheartedness?

        Should read the comments sections of patient portals every time one of above mentioned Neuros writes an article advocating „hit hard and early“. The ensuing shit-storms remind of the Jacobin Club from 1792, just no guillotine..

  • Thank you for the post MouseDoctor

    Thank you for the additional context Marc

    Re
    “Apparently, there was a complete breakdown in the discussions around the updated guidelines for the treatment of MS provided by the German Neurological Society”
    and
    “…. apparently there was a strong fraction which wanted to reinforce strict adherence to the escalation approach and … ”

    The impression I had is that German neurologists are not constrained in the way that NHS neurologists are.
    Is that right? Or would they be forced to follow the official guidelines?
    Will insurance object to deviations from guidelines?

    • The DGN Guidelines for treatment of Multiple Sclerosis provide the Basis for Cost Coverage by Health Care in Germany. If a Neuro prescribes a treatment not conforming to these, it’s considered off-label and needs to go through a specific approval process which could take months and unclear outcome..

  • Thanks for this, MD.
    I’d just started to do a little dance around the room when I read Marc’s comments. I hadn’t heard about it, but based on my own experiences here in Berlin, I can totally believe that there was strong disagreement and lack of consensus amongst neurologists. I’ll have a look to see if I can find more information.
    VVV – the experience that I’ve had is that adherence to EMA guidelines is very strict. Admittedly the course of my MS has been mild since diagnosis, but I have only ever been offered CRAB drugs and after reading the blog and asking my neurologists about the possibility of “flipping the pyramid” I was told it was “out of the question”, or “None of my patients are on Cladribine – it’s dangerous” and I distinctly got the impression that it was impertinent to ask the question. Regarding health insurance, I think that neurologists are allowed to prescribe off-label and deviate slightly but only up to a certain amount of money. There was recently a story about an insurance company trying to get a million Euros or so back from a doctors’ association as they felt that one of the members had oversubscribed off-label.
    A minefield indeed…

    • Thank you
      On flipping the pyramid, I guess a lot depends on the individual neurologist – that seems to be the case everywhere in the world.
      And insurance company tolerance of off-label could depend on cost. They may not mind something that costs less than the EMA recommendation

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