Multiple Sclerosis: Sustaining Care, Seeking a Cure

Posted July 15th, 2010 by

cmsc-logoOur research team here at PatientsLikeMe carries out world-class research in collaboration with academic centers, commercial partners (see “how we make money“), and to help answer questions from our patients. We share our findings with the world through this blog, peer-reviewed publications, and by attending academic conferences like the Consortium of Multiple Sclerosis Centers (CMSC) annual conference. This meeting, now in its 24th year, is for neurologists, nurses, researchers, and other healthcare professionals involved in MS to share their knowledge, network, and form new research collaborations.

In collaboration with our partners at Novartis, our MS community recently participated in a research study exploring the reasons why people don’t always take their disease-modifying therapies as prescribed. Adherence to medication is a big issue in chronic conditions; although we all mean to take our meds as prescribed by physicians, good intentions can fall by the wayside when real life interferes with our plans! Decreased adherence could lead to less medication efficacy, more relapses, and a higher burden of disability for MS patients.

By exploring the messages posted in our vibrant MS forum, and carrying out a review of the scientific literature, we constructed a new questionnaire called the “MS Treatment Evaluation Questionnaire” (MS-TEQ) that sought to explore and quantify the barriers that get in the way of people taking their DMTs as prescribed. As part of the validation process we also showed the questionnaire to some local MS patients to ensure it was easy to understand. In December of 2009, we sent out an invitation to 1,209 carefully selected patients and asked them to complete the MS-TEQ. Within just two weeks, we had complete responses back from 442 patients, a 37% overall response rate.

cmsc-poster-snapshot

The MS-TEQ addresses three areas: 1) MS-TEQ Barriers: the barriers faced by patients that stop them from taking their meds as prescribed (e.g., forgetting), 2) MS-TEQ SEs:  the side effects they experience (e.g., injection site reactions), and 3) MS-TEQ Cope: coping strategies they use to try and cope with these side effects (e.g., using an ice cube to reduce pain and itching). Our analysis found that for every 10 points on the MS-TEQ Barriers scale, patients did not take 10% of their medication as prescribed. However, we also found cause for hope; every coping mechanism they used to try and ameliorate their DMT side effects had a positive effect of 4% on the proportion of their DMTs that they took as prescribed.

At the conference’s poster session, we got a lot of interest from attendees and gave away all of our handouts and copies of the questionnaire, so you might be seeing the MS-TEQ in a clinic near you any day now! Our hope is that the questionnaire will help patients and their healthcare providers to understand why someone is struggling to take their medication as prescribed, and to give them a way of measuring this over time. We are currently preparing a manuscript to submit to a peer-reviewed journal to share our findings with the rest of the academic community.

Do you have trouble taking your MS disease-modifying therapies as prescribed? Check out our treatment database. Thousands of our members have written evaluations of the drugs used in MS, including advice and tips on how to stay adherent to your medication to improve your outcomes.

PatientsLikeMe member pwicks


6 Comments

  1. In checking out your treatment database, as you suggested, I found that only 36.4% of members were on the drug therapies.

    In your questionnaire you mention side effects and coping strategies, but no mention of financial considerations. This is a very real issue for US citizens with MS.

    thank you for a very informative website.

  2. Hi Laura,

    Thanks for checking out the treatment database! You’re right, so far we’ve got about 1/3 of our MS members sharing data about their disease-modifying therapies. We know from other work that a larger proportion have taken at least one DMT in the past but of course not everyone in our system has entered all their treatments yet.

    The idea behind this particular project was to look at barriers to adherence among people currently taking a DMT; many people with financial difficulties or problems with insurance aren’t currently on any DMT so we may not have heard from them as much in this survey. We did hear anecdotally, however, about some folks being “non-adherent” because their insurance coverage had changed or they couldn’t afford the co-pay, and we’ll be investigating that further in the future. In the meantime, we are collecting data in our treatment reports (such as this one about Copaxone) about patients’ out of pocket expenses for their treatments. In the future we’ll be collecting information about their insurance type so we can start cross-referencing this information more systematically.

    Also, if you check out our forums you’ll see many discussions around the best way to apply for access programs put on by some of the manufacturers, as well as other routes to getting access to disease modifying therapies in MS.

    Thanks for your input!

    Paul Wicks

  3. I applaud your initiative. So many people with MS have nowhere to turn, and can’t find enough information about their disease from their doctor. Information about MS should be free and people should be able to benefit from it instantly. Once again, congratulations!

  4. Blogs like these prove to be a valuable source of information for MS sufferers all around the world.

    As you are diagnosed with MS it helps to share you feelings and thoughts and experiences, and the way you cope with your MS with the world. You get to see how other people do it, and you help other people at the same time, which is a win win situation.

  5. Thank you for sharing this information. Since MS is a condition that’s difficult to diagnose, most patients start their life long fight with this condition with very few information, which is always scary. Your initiative should be appreciated by all MS sufferers, their families and friends. God Bless!

  6. I have had ms for 30 years. I live in Cape Town, South Africa. I had moved into secondary progressive multiple sclerosis before I could even try some of the tracks that are now available. I can no longer walk, have a suprapubic catheter and feel that I have MS everyday. Sometimes I feel annoyed that those people who have access to drugs to help them, just don’t use them. I cannot judge them as they go on their journey.

Leave a Comment