Pack your DMT tools for the long run!

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Over the past year, I was privileged to counsel many people when starting an MS disease-modifying treatment (DMT), and reviewed even more pwMS whom had been on a DMT for a considerable amount of time. This has given me valuable insights in which drug-related characteristics matter in the long run, both literally and figuratively. First, there is no doubt about the fact that some drugs are more efficient than others, and will increase the odds of you going for a long run in 10 years from now. Second, there is no doubt about some drugs being more tolerable than others making it much more easy to bear with them for a long time. Especially for women, compatibility with family planning might be an important characteristic to factor in. However, I noticed that grasping the relevant differences between the different DMT’s is difficult for pwMS. Many pwMS are making these kind of treatment choices for the first time, have no clue on which piece of information to focus an no idea what it means emotionally and physically to be on an MS drug for years on end. To confront this clinical need, myself, prof G, dr. Ruth Dobson, Heather Mah, Adam Paterson and last but not least the Barts-MS Advisory Group have been working on a “DMT tool”. 

The goal of this DMT tool is empowering pwMS to pick a treatment ‘rationally’ after being offered two or three drugs by their MS team. In our opinion, a rational treatment choice translates into a drug with a high efficacy when it comes to treating your MS but is equally compatible with your lifestyle, personal and professional ambitions. In the first part of the tool, we will therefore survey an individual’s appreciation of the factors that we feel should matter when making a DMT choice. In the second part of the tool, pwMS will be informed about how each one of the offered treatments behaves relative to the other ones based on these factors. 

The DMT tool can be found at the following link: https://clinicspeak.com/dmt/#/

In short, we invite pwMS to reflect on the following factors when making DMT choices: 

  • Delivery Method: Is it important to you whether the drug will be administered as a tablet, an infusion or as an injection?
  • Regular Side Effects: Is it important to you whether the drug might be associated with daily harmless but sometimes bothersome side effects?
  • Known long-term side effects: Is it important to you whether the drug might give rise to side effects such as infections or other autoimmune disorders when using it regularly for months or years?
  • Regular external visits: Is it important to you whether the drug would require regular visits to the hospital or local surgery for bloods to be drawn or to bring in urine samples?
  • Family Planning: Is it important to you whether the drug is compatible with conceiving (both male and female pwMS) and pregnancy?
  • Vaccination: Is it important to you whether vaccines are safe while using the drug and whether the drug is compatible with a good response to vaccines?
  • Prevention of relapses: Is it important to you that your MS treatment prevent new bouts of neurological symptoms?
  • Long-term disability: Is it important to you that your MS treatment prevents difficulties with walking or cognition in ten years from now?

Importantly, this is still only a beta version of the tool, and we need your input for the alpha version. We have tried to make the tool as practical and insightful as possible but as we all know: the proof of pudding is in the eating. We are looking forward to get your feedback on the design, content and overall usefulness of the DMT tool, and will use that input to improve the tool and make it clinic-ready. In summary: no DMT mountain too high, no comment too small. Please share!

Twitter: @SmetsIde

Disclaimer: Please note that the opinions expressed here are those of Ide Smets and do not necessarily reflect the position of the Barts and The London School of Medicine and Dentistry nor Barts Health NHS Trust.

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Ide Smets

19 comments

  • Really helpful and well thought out. I think a follow-on screen that gave more detail to each of the categories once the ranking is displayed would be even better. Bullet points listing side effects, brief research data on 10 year outcomes etc. So the patient experience is in 3 stages 1) ranking 2) a screen with further info about the drug they’ve selected but which is still on a simple, practical level. 3) discussion with neuro team at which they are given the fuller, official literature. I think this would improve the quality of discussion at that meeting and enable faster, more reliable decisions.

    • Yes, maybe we should indeed think about linking the by the tool suggested treatments to for example the web pages of the pharmaceutical companies that contain all these kind of verified, patient-friendly data on side effects and 10 year outcomes. Good suggestion, we’ll take it forward.

  • I think your tool is “marvelous” and much needed! Let me add a suggestion- I don’t know where this would fit in, but for me would have been very important to know. 1st, no one would have predicted a pandemic and perhaps a desire to switch your DMT. Had I known Ocrevus was a difficult (in my opinion) DMT to stop and switch from, I may have considered it differently. I was unaware of the large impact in my immune system and how long it would take to get back to normal, if I needed to be “normal” (aka, “during a pandemic”).

    • Yes, we have been thinking about integrating ‘switchability’ in the design phase of this tool but then judged it might overcomplicate matters. We will reconsider.

      • Perhaps something like:

        If new unexpected health events occurred in your life, how important is it to you, that you could stop your DMT treatment?

  • I filled it in based on what was important to me when I was first diagnosed and it said I should go on Lemtrada. If this tool had been available maybe it would have tipped me into making that decision. As it is, I was very happy to hear my neurologist’s strong recommendation was Tecfidera as taking pills seemed easier than an infusion and the monthly blood tests really put me off Lemtrada too. I was needle phobic at the time, but the quarterly blood tests for Tecfidera has all but cured me of that now.

    • That’s exactly what the tool is aiming for, putting all these DMT features next to each other rather then serially. Indeed, when you decide as a newbie pwMS on a drug you often decide based on one specific feature (oral vs injection) rather than seeing the full scope of the drug.

  • I am surprised by the outcome of mine. My two very important factors are prevention or relapses and long term disability. Everything else is a side show / tolerable, yet mavenclad came out on top and ocrevus (my actual DMT) on the bottom. This seems strange given that ocrevus has just about the best data on relapse prevention and is the only DMT licensed to progressive MS so presumably performs relatively well in the prevention of disability stakes as well

    • Yes, I agree, but the tool cannot only focus on prevention of relapses/long term disability and always takes also the other factors into account. And ocrevus probably scores lower than mavenclad on these other factors because of its other features: the uncertainty regarding vaccine readiness, the fact that it’s a maintenance rather than one-off induction therapy and the fact that there is an infection signal with ongoing longstanding infusion of ocrelizumab.

      • Mavenclad is ranked higher in the tool than both Ocrevus and Tysabri, for prevention of long-term disability, and equal on prevention of relapses. Is there any data to support this?

        I got the impression that both Ocrevus and Tysabri performed better than Mavenclad in both categories.

  • I am secondary progressive so DMT s are something that I’ve never been involved in for various reasons but I think that this is a great idea.

    • For your information: siponimod will be available soon for secondary progressive MS. Feel free to discuss with your consultant.

  • A few thoughts:

    1) I agree with Tom A re: problems with discontinuation. I started fingolimod sometime between 6-12 months after it came out (I can’t recall exactly) and it was absolutely the right decision given the alternatives and information that were available at the time. But if I were picking a DMT now the discontinuation issues would have been a big consideration for me.

    2) The tool recommends Tysabri as a second choice for me (after Mavenclad), but I have had neurologists specifically tell me not to consider Tysabri because of my JCV antibody titer. Now, that may be outdated information (it has been a number of years since the subject has come up) and obviously the tool shouldn’t be too complicated, but…. dunno. I assume that is part of the “known long-term side effects” category, but there’s side effects and then there’s side effects.

    • 1) Noted
      2) Yes, agree, the tool is mainly useful after you have been offered already some treatments by your neurologist. Because otherwise you might end up including DMT that are actually not available or suitable to you. Anyway, JC-titre is not very relevant when starting Tysabri because the risk of PML is so low in the first 12-24 months. It rather means you should be prepared to switch gear after two years.

  • This seems heavily biased towards Mavenclad. I don’t want Mavenclad, I want something more effective, yet I can’t get Mavenclad out of rank 1 or 2.

    • On the graph on the second page you can see that Lemtrada scores better than Mavenclad in terms of Prevention Relapses and long-term disability. But if you take all lifestyle factors into account, Mavenclad will score better than Lemtrada because it has less side effects and is more convenient in terms of delivery method etc. It is indeed currently not possible to only select Prevention Relapses and LT-disability (if this would be the only thing that matters to you), and the other lifestyle factors are always taken into account too.

      • The graph ranks both Tysabri and Ocrevus lower in effectiveness for long-term disability than Mavenclad, only Lemtrada is ranked higher. That doesn’t seem right?

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