What 60,000 People with MS Are Saying about MS DMTs, and What It Tells Us about Opportunities to Improve MS Care

Background: People with multiple sclerosis (PwMS) value treatment discussions with their healthcare provider (HCP), yet significant education gaps exist for patients to start and remain adherent. To fill educational gaps on DMTs, many seek perspectives of other patients with first-hand experience by connecting on patient social networks. Often, PwMS provide greater detail with other patients than they have the time or comfort level to share with a HCP. Directly understanding the key challenges, concerns and habits of PwMS is crucial to improving tools and resources to help better manage MS and stay adherent. 

Objectives: Leveraging one of the largest MS social networks, we set out to understand what topics related to DMTs were most important to PwMS and how they talk about, perceive, and experience the DMT.

Methods: Research was conducted on organic discussions within MyMSTeam.com, a social network >60,000 people diagnosed with MS. Over 3,300 verbatim comments were anonymized, coded, categorized, and analyzed in a rigorous fashion by key themes. Analysis focused on 12 DMTs and discussions were overlaid with self-reported data on gender, age, date of diagnosis, MS type, current DMT and effectiveness ratings.

Results: Analysis provided critical insight and identified obstacles in DMT treatment, from obtaining a prescription through remaining on or stopping therapy. The top topics were side effects experienced (35%), reasons for stopping treatment (19%), perceived efficacy (18%), questions, hopes and concerns starting a new DMT (18%), the “rituals” to mitigate side effects (6%), and insurance/financial hurdles to getting on or staying on treatment (4%). 

For DMTs with tolerability effects like flu-like symptoms, GI issues, fatigue, etc., patients shared tips or rituals on mitigation strategies. Even when mitigation strategies were not published or where nurse training was not provided, the patient community themselves arrived at remarkably common themes and practices. 

Conclusions: Understanding the disconnect, challenges and concerns around cost, treatment and side effects reveals significant opportunities for HCPs to better educate their patients. This includes education on financial assistance, setting the right expectations, adverse events, and providing tools and educational materials to help stay the course. Further, understanding mitigation strategies for tolerability and outcomes identified as most important to patients can inform future research in MS.