Background: Considering the multiple treatments approved for multiple sclerosis (MS) by the Food and Drug Administration (FDA) and European Medicines Agency (EMA), determining a treatment strategy for patients with clinically isolated syndrome (CIS) and relapsing-remitting MS (RRMS) can be challenging. To date, an overview of the needs and preferences of patients at each treatment decision-making moment is lacking. Therefore, the aim of this systematic review is to examine the existing literature about the needs and preferences of patients with CIS and RRMS when making treatment decisions. Methods: A systematic search was done using Embase, Medline, PsychINFO, Web of Science and Google Scholar. Eligibility criteria included whether the article described a study of adults with CIS/RRMS and reported patient needs or preferences regarding first-line disease modifying treatment (DMT) decisions. Publications were categorized by treatment decision: initiation of first DMT (D1), DMT adherence/discontinuation (D2a/D2b), and switch to a second DMT (D3). A separate category was created for stated preference studies such as discrete choice experiment methods to examine the relative importance of different treatment attributes. Publications were compared to identify key factors. Results: The search yielded 2789 articles after removal of duplicates and 434 full-text publications were reviewed for eligibility. Twenty-four articles fulfilled all criteria: n = 5 (D1), n = 12 (D2a), n = 13 (D2b), and n = 3 (D3); six articles studied more than one treatment decision. The need for social support is important during D1. The most commonly reported reasons for adherence/discontinuation/switch included forgetfulness, side-effects, and injection-related reasons. Eight articles described preference studies; the most important DMT attributes were efficacy, mode and frequency of administration, and side-effect profile. Conclusions: Understanding the needs and preferences of CIS/RRMS patients regarding DMT attributes and non-treatment related attributes are important to improve treatment decision-making and reduce non-adherence. Studies are needed to understand patient preferences upon treatment initiation. Furthermore, preference studies should include attributes based on the patient perspective.

Decision-making, Disease modifying treatment, Multiple sclerosis, Patient needs, Patient preferences,
Multiple Sclerosis and Related Disorders
Erasmus School of Health Policy & Management (ESHPM)

Visser, L.A. (L. A.), Louapre, C. (C.), Uyl-de Groot, C.A, & Redekop, W.K. (2020). Patient needs and preferences in relapsing-remitting multiple sclerosis: A systematic review. Multiple Sclerosis and Related Disorders (Vol. 39). doi:10.1016/j.msard.2020.101929