Elon Musk has not been able to reach Mars yet but we have been able to officially launch the ‘DMT tool’ on the clinicspeak website! On April 29th, we invited all readers of The MS blog to share their opinions about our ‘DMT tool’. This online web tool was designed to help pwMS select a disease-modifying treatment that matches with their lifestyle and is fit for the literal and figurative long run. We got super valuable input from 82 individuals that have all been reviewed and discussed among the Barts-MS team, and resulted in the following changes:
- We changed the order of the factors queried in the survey on page 1. Prevention of relapses and long-term disability are now rightfully on the first and second spot of the survey.
- We understood from your comments that delivery method (i.e. whether a drug is delivered orally, subcutaneously or intravenously) is a dealbreaker for many individuals and cannot be rated as ‘Important’ or ‘Unimportant’. However, some of our most effective treatments can only be ‘delivered’ in one specific way. As we would like the DMT tool to give pwMS an overview of ALL their treatment options, we will not ask you anymore to rate delivery method in the initial survey. Alternatively, we have indicated now much more clearly on the results page how each of the different DMT’s is administered. This allows you to evaluate what you would lose or gain by prioritising oral drugs for example.
- The results page is generated based on a weighted average method taking into account the degree of importance you attributed to the different treatment factors queried in the survey on page 1. As this was not clear to many of you, we indicated our methods now shortly below the results.
- As many people indicated they would like us to add more information about adverse effects, we have now linked our tool to the MS Trust website which provides up-to-date and palpable information on all MS treatments.
- We included a button to export your results. This allows you to review the results without having to fill out the survey again, and ideally: to print the results and bring them with you on your next clinic appointment with your MS specialist nurse or consultant.
Thank you all for sharing your DMT tool user experience. This helped us getting rid of our cognitive biases and create a user-friendly, accessible tool that is now much closer to achieving its ultimate goal: empowering pwMS to make a rational choice about their MS treatment incorporating lifestyle, personal and professional ambitions. We hope you are equally enthusiastic about this new version, and please share the link, spread the word and let us know what’s your experience when using the tool!
Twitter:@SmetsIde
Disclaimer: Please note that the opinions expressed here are those of dr. 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.
Excellent, Really good tool. Gave te answer I expected when I put in different answers. It works really well. Very timely.
Hi, I submitted relapses and long-term disability as very important and everything else as unimportant. I selected natalizumab, cladribine and ocrelizumab as my choices. Cladrabine was recommended but I think it should have been natalizumab based on the 2 factors that are important (and unconcerned about anything else).
I think the tool is a great idea, many thanks for creating!
Yes, you are right. This is probably because still a minor weight is given to the other factors queried (although you indicated them as non-important). I will discuss this with our designer. Thanks for testing.
We have tweaked the algorithm, and now it does not take into account anymore factors that are rated as ‘unimportant’. Feel free to test the tool again!
It’s a nice tool, but as usual, everything depends on the variables that are put into the matrix.
It gives the illusion that there is 1 clear-cut answer to every question, then weigh the importance of the few questions, and the ‘correct’ answer follows. But every question contains multiple subquestions, and nuances that are not translated on a single axis.
True! But therefore it would be ideal if pwMS could discuss this with their MS specialist nurse or consultant.
Mavenclad is as effective for long-term disability as Tysabri, Kesimpta and Ocrevus!?
Indeed, we have put them all on the same shelf.
interesting that Ofa had a higher preventing relapse score than Ocr, I was expecting the relapse score to be the same and Ocr has a higher long-term efficacy score.
Yes, we based the efficacy data on a network analysis of all currently available DMT’s which concluded to an annualised relapse rate of 0.28 for alemtuzumab, 0.3 for ofatumumab, 0.31 for natalizumab and 0.33 for ocrelizumab. But admittedly, differences are small.
Given these numbers are not exactly comparable, personally I find rating purely based on phase 3 study measurements is not telling the full story. (for example if I were newly diagnosed choosing between ofa and ocr, using this tool I would not consider ocr.)
May I ask how was long term efficacy measured? % of patients Disease progression at x years?
It would also be interesting to see people’s preferences for factors 3-7 as I imagine everyone will consider factor 1 and 2 the most important.
Do we really need to separate “prevention of relapses” and “long-term efficacy”? These two factors scale perfectly for all listed DMTs, maybe except for teri but does it matter for patients?
I find it complicating things, and sending signals on unproved ideas to pwMS with limited knowledge (who actually needs this tool).
This Blog is trying too hard to make the case relapse is not all, but unless there are good DMTs respond to different processes separately, this is simply confusing people.