For many people living with multiple sclerosis (MS), treatment decisions can often be nuanced and complicated. In April of 2018, the American Academy of Neurology (AAN) released new guidelines about when to begin, change, and end disease-modifying therapies (DMTs) for MS patients. The guidelines encourage aggressive treatment, starting a DMT especially when symptoms of MS first appear or if a person’s disease is highly active.

Despite the AAN recommendations, MS In America 2018, a syndicated survey conducted by Health Union on MultipleSclerosis.net, revealed that of the 5,320 respondents surveyed, approximately 75% of diagnosed MS patients are currently treating with a DMT, 6% are DMT naïve while 20% have used a DMT in the past but are no longer treating. The survey, which seeks to understand a myriad of intricacies of daily life with MS, helps shed light on some of the differences among these particular groups of patients and their treatment experiences. For example, when specifically analyzing those patients who have had experiences with DMTs, most respondents felt able to tolerate the treatment, had moderate levels of satisfaction and were not very likely to switch or stop treatment in the near future.

Along with the AAN guidelines, MS In America 2018 results may help the healthcare industry gain a broader understanding of people’s experiences, or lack thereof, with DMTs and other MS treatment options.

DMT Naïve

Although only 6% of MS In America 2018 patient respondents had never used a DMT, the results revealed unique aspects of their healthcare journey. There were significant differences in DMT naïve patients when compared to the rest of the patient groups. DMT naïve patients were more likely to be diagnosed at an older age, to have never treated a relapse, to be currently diagnosed with primary progressive MS (PPMS), and to prefer making lifestyle or diet changes rather than take a prescription.*

Of these respondents, more than half expressed concern about potential side effects as a key barrier to trying a DMT, while 46% felt they were able to manage well with their current treatment plan. While not significant, 21% of the DMT naïve respondents did cite financial issues as a barrier to trying the treatment, and MS In America 2018 revealed more than four in 10 of all respondents cite a negative impact on their household finances (related to MS). The 2018 AAN guidelines reinforce that a patient’s inability to afford a DMT shouldn’t stand in the way of that patient receiving the treatment. The guidelines suggest doctors should help their patients find the necessary payment assistance for the recommended treatment.

Past DMT User

Though the reasons for stopping a certain treatment can vary immensely, MS In America 2018 highlighted commonalities among those patients who had used a DMT in the past and no longer use. People who had used a DMT in the past (20% of the patient respondents) were more likely to be currently diagnosed with secondary progressive MS (SPMS), classified with a severe level of disability, and to have other health conditions. These particular patients also expressed that MS affects their lives more so than other patients, and feel most frustrated about having tried everything and cannot control their symptoms.*

Sixteen percent of this group stopped using DMTs due their healthcare professional suggesting a change, and it seems that with an increase in perceived severity of MS symptoms, comes the abandonment of using DMTs. Discomfort with the side effects of the DMT and lack of efficacy in managing symptoms were the leading reasons ceasing their most recent DMT usage, according to all respondents. In line with the AAN guidelines, HCPs must respect patient preferences as a paramount component of care for chronic conditions. Because of the variety of DMTs available, evaluating patient preferences may improve acceptance of and adherence to DMTs.

Current DMT User

The largest segment of the MS In America 2018 patient respondents, around 75%, were currently using a DMT to treat their MS. With the approvals in recent years of new DMT treatments, especially for those with PPMS, more of the patient population have been exposed to this particular treatment option. The survey revealed that current DMT users were the youngest currently in age (in fact, patients under 50 were more likely to be currently using a DMT) and were more likely to be currently diagnosed with relapsing-remitting MS (RRMS). When looking at other aspects of their life while on a DMT, current users were more likely to see a MS specialist, have a better relationship with their HCP on most measures*, rate their quality of life the highest, and rate their symptoms mostly under control on their current treatment plan.*

Along with the AAN guidelines, survey results indicate that considering a person’s lifestyle when deciding a treatment is critical in a doctor/patient conversation. This includes how the treatment is administered (e.g., oral, injection, infusion), as well as its efficacy, safety, and cost. With differences in DMT experience come differences in patients’ attitudes, outlook, and physical impact of MS, so understanding more about people who have made certain treatment decisions can be a very useful tool in designing patient-centric programs.

Discover the latest insights from Multiple Sclerosis In America 2019 here.