People with relapsing-remitting multiple sclerosis (RRMS) who don’t use disease-modifying therapies (DMTs) are more likely to have been misdiagnosed previously, and to have poorer relationships with their healthcare providers, the results of a new survey suggest.
The survey, titled “Multiple Sclerosis In America 2019,” was conducted by Health Union, a company that’s created online communities for people with chronic conditions.
A total of 6,034 people responded to the survey between April 2 and June 24, 2019 — 5,911 MS patients, and 123 caregivers. Of the patients, about two-thirds had RRMS, which is the most common type of multiple sclerosis (MS).
Of the respondents with RRMS, 78% were taking a DMT — therapies aimed at slowing the natural course of MS. A further 16% had previously used a DMT but were no longer using one, and 6% had never used a DMT.
Among respondents who had never used a DMT, the most common reason, reported by 45%, for not using one was concern for side effects. Confidence in their current treatment, financial concerns, and a lack of recommendation from their current healthcare provider were also frequent reasons given for not using a DMT.
Respondents who were and weren’t taking DMTs were compared in order to better understand other factors that might lead a patient not to take a DMT.
“People with relapsing forms of MS who don’t use DMTs represent a small portion of the community, but it is so important to understand the unmet needs and nuances of their patient journeys,” Tim Armand, co-founder and president of Health Union, said in a news release.
Results showed that people who do not take DMTs were more likely to have been initially misdiagnosed, and to have been diagnosed more recently (less than two years ago). They were also less likely to have experienced symptoms before age 20.
Relationships with healthcare providers also seem to play a significant role in these decisions, as respondents who use DMTs were more likely to see a neurologist who specializes in treating MS, whereas those who don’t use DMTs were more likely to report not seeing a healthcare provider for MS at all.
Furthermore, respondents who use DMTs were more likely to report that they were satisfied with the care they received, and that they were offered clear, easy-to-understand explanations about tests and treatment options.
People who use DMTs were also more likely to report feeling that their current treatment plan is under control. They were more likely to report actively seeking out information about new MS treatments, whereas respondents who have never used DMTs were more likely to say they’d prefer changing their lifestyle or diet, rather than taking medications.
Overall, the results of the survey help to identify the unmet needs of MS patients, and to offer “a greater slate of resources for people who may not be experiencing the same condition path as many others with MS,” Armand said.