Use of patient reported outcomes in multiple sclerosis clinical management: Scoping literature review
BACKGROUND: Patient-reported outcomes (PROs) are collected in some multiple sclerosis (MS) care settings, yet their uses in MS clinical care are unclear. OBJECTIVES: To determine how PROs are used in MS clinical care and gain insights into instruments, purposes, facilitators/barriers, and impact. METHODS: Scoping review of studies reporting PRO use in MS clinical practice (January 2012-June 2025) across seven electronic databases. RESULTS: Of 6797 records screened, 21 articles (10 countries; 43 instruments) met review criteria. Frequently assessed domains were health-related quality of life (48%), depression (43%), and fatigue (29%). Electronic collection predominated (57%), yet only 38% integrated PROs with electronic health records (EHRs). Purposes included program evaluation (33%), secondary analysis (24%), collection methods (19%), and quality improvement (14%). While 48% reported process or system-level changes, only 29% documented clinical actions triggered by PRO data. Facilitators included brief measures, delegation to non-physician staff, and EHR integration. Barriers included low physician review, lack of response protocols, and absent auditing. CONCLUSIONS: Articles on PROs in MS care are sparse. No consistent uses and purposes were found. Advancing meaningful PRO use requires response protocols, actionable thresholds, clinician accountability, and routine auditing of PRO-guided decisions.
Authors
- Paul Kamudoni (ORCID: https://orcid.org/0000-0002-4669-0647)
- Maja Kuharić (ORCID: https://orcid.org/0000-0003-3696-9086)
- Jeremy Hobart (ORCID: https://orcid.org/0000-0002-2114-7920)
- Corinne H. Miller (ORCID: https://orcid.org/0000-0002-9262-152X)
- Chelsea Perschon
- Jaume Sastre‐Garriga (ORCID: https://orcid.org/0000-0002-1589-2254)
- Patrick Vermersch (ORCID: https://orcid.org/0000-0003-0997-8817)
- Gary Cutter (ORCID: https://orcid.org/0000-0002-8455-980X)
- David F Cella (ORCID: https://orcid.org/0000-0002-9881-4541)
- Iris‐Katharina Penner (ORCID: https://orcid.org/0000-0002-6746-1034)
- Robert N McBurney (ORCID: https://orcid.org/0000-0003-1747-1004)
- Aksel Sıva (ORCID: https://orcid.org/0000-0002-8340-6641)
- Paola Zaratin (ORCID: https://orcid.org/0000-0001-8935-4670)
- Robert Hyde (ORCID: https://orcid.org/0000-0002-8705-9405)
- Cindy J. Nowinski (ORCID: https://orcid.org/0000-0001-5608-909X)
- Christine Lebrun‐Frénay (ORCID: https://orcid.org/0000-0002-3713-2416)
- Helga Weiland
- Angela White
- Gilles Edan
- Mohsharif Nasrulloeva
- Magaly Tourtelier-Girard
- Per S. Sorensen
Institutions
- Northwestern University (US)
- Alabama Department of Public Health (US)
- National Multiple Sclerosis Society (US)
- Florida Institute for Human and Machine Cognition (US)
- Inserm (FR)
- Merck KGaA, Darmstadt (Germany) (DE)
- Université de Lille (FR)
- University Hospital of Bern (CH)
- Copenhagen University Hospital (DK)
- Centre Hospitalier Universitaire de Lille (FR)
- Centre Hospitalier Universitaire de Nice (FR)
- University of Alabama at Birmingham (US)
- Associazione Italiana Sclerosi Multipla (IT)
- Istanbul University-Cerrahpaşa (TR)
- Vall d'Hebron Hospital Universitari (ES)
- Centre Hospitalier Universitaire de Rennes (FR)
- Optimal Solutions (United States) (US)
- Lille Neurosciences & Cognition (FR)
- Fondazione Italiana Sclerosi Multipla (IT)
- Istanbul University (TR)
- Peninsula College of Medicine and Dentistry (GB)
- University of Plymouth (GB)
Publication Details
- Journal
- Multiple Sclerosis Journal
- Published
- 2026-09-29
- DOI
- https://doi.org/10.1177/13524585261481124
- Primary Topic
- Multiple Sclerosis Research Studies
- Type
- article
- Field-Weighted Citation Impact
- 0.00