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Updated: Aug 6, 2026
The Multiple Sclerosis Performance Test (MSPT): An iPad-Based Disability Assessment Tool
Published on: June 30, 2014
Insights from a Danish nationwide implementation of patient-reported outcomes in multiple sclerosis
Rolf Pringler Holm1, Luigi Pontieri1, Mie Reith Mahler1
1Danish Multiple Sclerosis Registry, Department of Neurology, Copenhagen University Hospital -Rigshospitalet, Glostrup, Denmark.
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.
Insights
Patient-reported outcomes (PROs) in multiple sclerosis (MS) show adaptability across diverse patient groups. However, sustained commitment is crucial for long-term PRO use and addressing implementation challenges.
Area of Science:
- Neurology
- Digital Health
- Patient-Centered Care
Background:
- Traditional multiple sclerosis (MS) monitoring via Expanded Disability Status Scale (EDSS) and MRI may not capture the full patient experience.
- Patient-reported outcomes (PROs) offer valuable insights into how individuals with MS perceive their disease and its impact.
Purpose of the Study:
- To evaluate the Danish implementation of PROs for people with MS (PwMS) three years after its launch.
- To compare clinical and demographic characteristics of PRO users versus non-users.
- To assess PRO adherence rates among PwMS.
Main Methods:
- Analysis of data from 16,246 individuals with MS (2,121 PRO users, 14,125 non-users) as of January 1, 2025.
- Comparison of age, sex, disease duration, disability scores (EDSS), and treatment status between PRO users and non-users.
- Examination of geographical distribution of PRO users, with a focus on Region Hovedstaden.
Main Results:
- PRO users were younger (50.6 vs. 53.2 years), more often female (73.6% vs. 68.0%), and had shorter disease duration (15.1 vs. 16.4 years).
- PRO users were more likely to be on high-efficacy disease-modifying therapies (75.6% vs. 62.2%) and showed different distributions in EDSS scores.
- A significant majority of PRO users (75.1%) resided in Region Hovedstaden.
Conclusions:
- The PRO platform demonstrates adaptability for diverse PwMS, including varying ages and disability levels.
- Differences observed between PRO users and non-users suggest potential implementation challenges.
- Sustained commitment and support are essential for promoting long-term PRO utilization in MS care.
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