Multiple sclerosis journal - experimental, translational and clinical · 2026
Insights from a Danish nationwide implementation of patient-reported outcomes in multiple sclerosis.
СтатьяНазвание и аннотация: Перевод в очереди
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Holm Rolf Pringler, Pontieri Luigi, Mahler Mie Reith, Joensen Hanna, Kant Matthias, Thomsen Trine Hørmann, Marstrand Lisbet, Steenberg Josephine, Sejbaek Tobias, Mathiesen Henrik Kahr, Poulsen Mai Bang, Asgari Nasrin, Rasmussen Peter Vestergaard, Stilund Morten Leif Munding, Schäfer Jakob, Kristensen Signe Gro, Bramow Stephan, Ala Sara, Sorensen Per Soelberg, Sellebjerg Finn, Magyari Melinda
Аннотация
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.
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.