Patient-Reported Outcomes in Multiple Sclerosis: An Overview

Summary

PROs can generate valuable information about perceived health status, function, quality of life, and experience of care using self-reported sources. Validated PRO assessment tools include PROMs and PREMs. PROs are currently utilized in research settings (especially PROMs) but are also being used in clinical practice, quality improvement initiatives, and population health applications using LHS approaches. PROs have the advantages of empowering and informing persons with MS and clinicians to optimize patient-centered care, improve systems of care, and study population health outcomes. Barriers include PROM validity, reliability, comparability, specificity, interpretability, equity, time, and cost. Generic PROMs and PREMs, and some MS-specific PROMs, can be used for persons with MS. Unfortunately, no PREMs have been developed specifically for persons with MS, and this is an area for future research. With appropriate development and utilization in LHS applications, PROs can inform patient-centered clinical care, system-level improvement initiatives, and population health research, and have the potential to help facilitate coproduction of health care services.

Acknowledgments: The authors thank Ann Cabot, DO, of the MS Specialty Care Program at Concord Hospital and (especially) peer mentors from a peer outreach wellness program for people with MS (who have asked to remain anonymous) for interviews conducted with their permission to inform the case study described in this article. The case study used in this manuscript has been de-identified, with some aspects modified from actual, and the person in the case study is fictitiously named.

Corresponding author: Brant Oliver, PhD, MS, MPH, APRN-BC, Department of Community & Family Medicine, Dartmouth-Hitchcock Medical Center, Lebanon, NH 03756; brant.j.oliver@dartmouth.edu.

Financial disclosures: None.