Abstract
PURPOSE: Disease-modifying therapies (DMTs) are vital for managing multiple sclerosis (MS), but research using administrative data often excludes patient preferences and factors clinicians consider in treatment decisions. Patient experience data are crucial to understand and improve MS treatment initiation, adherence, and outcomes. METHODS: A cross-sectional survey of US adults with MS or clinically isolated syndrome was conducted online from December 2022 to January 2023 by the MS Coalition. A mixed methods analysis was conducted: logistic regression for quantitative data and thematic analysis of qualitative data. RESULTS: Among 1,323 participants (median age 55; 78% female), 80% expressed concerns about loss of independence, 65% about financial impacts, 64% about emotional impacts, 57% about relationships, and 42% about careers. Emotional tolls included identity loss, stress from navigating healthcare, and financial strain on families. Concerns varied by age, sex, and disability status. Nearly all participants (97%) reported DMT experience, with 73% having used two or more DMTs. Key factors in initiating DMT included slowing disease progression (92%), preventing relapses (89%), and following medical advice (89%). Financial barriers, such as high out-of-pocket costs, led to treatment delays or discontinuation in 19%. Barriers varied by demographic factors and included stress from medication costs, insurance denials, and fear of losing health coverage. Financial assistance was crucial for many. Half of participants had stopped a DMT due to doctor recommendations, side effects, or insurance issues. CONCLUSION: The survey highlights the emotional and financial burdens of living with MS, including concerns about independence and relationships. The findings underscore the need for comprehensive care and provide actionable recommendations for managed care, research, and healthcare providers.