Insights from a Danish nationwide implementation of patient-reported outcomes in multiple sclerosis

Multiple Sclerosis Journal - Experimental, Translational and Clinical · Published 2026-07-01 · DOI 10.1177/20552173261468115

Free full text

Authors (21)

Rolf Pringler Holm, Luigi Pontieri, Mie Reith Mahler, Hanna Joensen, Matthias Kant, Trine Hørmann Thomsen, Lisbet Marstrand, Josephine Steenberg, Tobias Sejbaek, Henrik Kahr Mathiesen, Mai Bang Poulsen, Nasrin Asgari, Peter Vestergaard Rasmussen, Morten Leif Munding Stilund, Jakob Schäfer, Signe Gro Kristensen, Stephan Bramow, Sara Ala, Per Soelberg Sorensen, Finn Sellebjerg, Melinda Magyari

Abstract

Background Multiple sclerosis (MS) monitoring often relies on traditional methods like the expanded disability status scale (EDSS) and magnetic resonance imaging, which may not fully reflect patients’ health. Patient-reported outcomes (PROs) provide valuable insights into patients’ experiences of their disease. Objectives This study evaluated the Danish implementation of PROs for people with MS (PwMS) 3 years post-launch, comparing clinical and demographic characteristics between PRO users and non-users, and assessing PRO adherence. Results As of 1 January 2025, 2121 PwMS had signed up for PRO, compared to 14,125 who did not. PRO users were younger (mean age 50.6 vs. 53.2 years), more frequently female (73.6% vs. 68.0%), had a shorter disease duration (15.1 vs. 16.4 years), and were more likely to be on high-efficacy disease-modifying therapies (75.6% vs. 62.2%). Additionally, fewer PRO users had low EDSS scores (<3, 53.7% vs. 56.1%) and high scores (>6, 16.5% vs. 18.9%). Most enrolled patients lived in Region Hovedstaden (75.1%). Conclusion The study highlights differences in profile between PRO users and non-users, demonstrating the PRO platform's adaptability across different ages and disability levels in PwMS. However, these findings also highlight potential implementation challenges and emphasize the need for sustained commitment to support long-term use of PRO.

Abstract from DOAJ. Public domain (CC0 1.0).

Read the article at the publisher →

Publication details

Year
2026

Citation

Holm, R., Pontieri, L., Mahler, M., et al. (2026). Insights from a Danish nationwide implementation of patient-reported outcomes in multiple sclerosis. Multiple Sclerosis Journal - Experimental, Translational and Clinical. https://doi.org/10.1177/20552173261468115

Related articles