Search

Background: Many people diagnosed with relapsing multiple sclerosis (MS) will eventually transition to secondary progressive MS (SPMS). Until recently, only mitoxantrone had been approved by the US Food and Drug Administration as a disease-modifying therapy (DMT) for this MS subtype. In 2018, however, the agency accepted an application for siponimod for treatment of SPMS. In anticipation of this drug's approval, the MS Coalition, a network of 9 independent MS organizations, surveyed people with SPMS to understand how the disease affects their lives and their experiences with and attitudes about DMTs. The survey was developed with the Institute for Clinical and Economic Review (ICER), which at the time was conducting a review of siponimod for use in SPMS. Objectives: 1) To understand the challenges that people with SPMS face, including impacts on quality of life. 2) To learn about current use of DMTs among people with SPMS and their perspectives on future DMTs that could be developed for SPMS. Methods: Representatives of MS Coalition member organizations and ICER developed this web-based survey, which was then disseminated by MS Coalition members whose constituents include people with MS. Results: A total of 2263 respondents completed the full survey, and 2966 answered at least 1 question. Of those who participated in the survey, 51% reported being unable to work because of disability, 69% needed help with activities of daily living, and 86% used a mobility aid. About three-fourths chose "fewer available treatment options" (78%) and "decline in quality of life" (72%) as impacts associated with their form of MS. Regarding use of DMTs, 37% reported no current use, and 22% indicated that they were taking Ocrevus. The other DMTs included in the survey were each used by fewer than 10% of respondents. When asked to consider a hypothetical new drug for SPMS, respondents expressed broad interest in possible benefits the drug could provide, including prevention of brain atrophy and improvement in SPMS symptoms. Side effects and long-term risks topped the list of reasons respondents gave for why they might not stay on a new drug. In responses to open-ended questions about impacts on daily life and family, common themes related to isolation, burden on family members, stress, and loss of mobility. Conclusions: Our respondents with SPMS described experiencing profound challenges, and their information provides insights into target areas of unmet need warranting continued therapeutic development. [ABSTRACT FROM AUTHOR]