This review reports on the development of patient-reported outcome measures (PROMs), published within the past ten years, for people with multiple sclerosis (PwMS). Moreover, this review evaluates the extent to which patient participation was integrated in the development of the PROMs. A systematic review was conducted, and four relevant articles were extracted, from which nine PROMs were identified. Patient involvement in the development phase was identified in three PROMs. The results emphasize the need for more patient involvement in the development of new MS-specific PROMs to ensure that the measures reflect the needs and priorities of PwMS.
This article is associated with the Policy & Measurement lens of The Beryl Institute Experience Framework. (https://www.theberylinstitute.org/ExperienceFramework).
Reitzel SB, Magyari M, Skovgaard L, Kristiansen M. Patient involvement in the development of PROMs within the MS Field: A systematic review. Patient Experience Journal. 2022; 9(1):169-173. doi: 10.35680/2372-0247.1662.