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!
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.