Measuring outcomes that matter most to people with multiple sclerosis: the role of patient-reported outcomes

Abstract

Purpose of reviewPatient-reported outcome (PRO) represents a unique opportunity to measure the impact of health research, and care on outcomes that matter most to people with multiple sclerosis (PwMS).Recent findingsHow to incorporate PROs in MS clinical trials and, practice remains a matter of debate. The variety of measures available for use in MS has some benefits, but the lack of a set of standard measures has significant disadvantages. To help meeting the challenge, different PROs standard sets have been developed (PROMIS) for use across a broad range of chronic health conditions, and SymptoMScreen, specifically for MS. However, many of them were not co-created with PwMS and lacking understanding about what matters to patients. The newly proposed MS care unit model together with emerging initiatives such as iConquerMS and PROMOPROMS, are shaping new meaningful PROs. However, the uptake of PROMs in all settings can be effective only by a commonly held strategic agenda shared by all relevant stakeholders.SummaryThe newly born PRO Initiative for MS (PROMS) aims to develop a strategic agenda shared by all relevant stakeholders to help meeting the challenge of developing PRO measures that correspond to the needs of all stakeholders.