Evidence map›Paper›PMID 42499405›Full record

ArticleMultiple sclerosis journal - experimental, translational and clinical

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

Rolf Pringler Holm, Luigi Pontieri, Mie Reith Mahler, Hanna Joensen, Matthias Kant, Trine Hørmann Thomsen, Lisbet Marstrand, Josephine Steenberg, Tobias Sejbaek, Henrik Kahr Mathiesen and 11 more

Abstract read
In one paragraph

Article in Multiple sclerosis journal - experimental, translational and clinical. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
0citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

0 citing papers in PubMed.

No citing paper in PubMed yet.

4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

21 authors.

Rolf Pringler HolmDanish Multiple Sclerosis Registry, Department of Neurology, Copenhagen University Hospital -Rigshospitalet, Glostrup, Denmark.ORCID https://orcid.org/0000-0001-5856-0228
Luigi PontieriDanish Multiple Sclerosis Registry, Department of Neurology, Copenhagen University Hospital -Rigshospitalet, Glostrup, Denmark.ORCID https://orcid.org/0000-0002-1506-3827
Mie Reith MahlerDanish Multiple Sclerosis Registry, Department of Neurology, Copenhagen University Hospital -Rigshospitalet, Glostrup, Denmark.ORCID https://orcid.org/0000-0003-0484-8220
Hanna JoensenDanish Multiple Sclerosis Registry, Department of Neurology, Copenhagen University Hospital -Rigshospitalet, Glostrup, Denmark.
Matthias KantDepartment of Neurology, Hospital of Southern Jutland, University of Southern Denmark, Aabenraa, Denmark.
Trine Hørmann ThomsenDanish Multiple Sclerosis Registry, Department of Neurology, Copenhagen University Hospital -Rigshospitalet, Glostrup, Denmark.
Lisbet MarstrandDanish Multiple Sclerosis Center, Department of Neurology, Copenhagen University Hospital - Rigshospitalet, Glostrup, Denmark.
Josephine SteenbergDepartment of Research and Development, The Danish Multiple Sclerosis Society, Valby, Denmark.
Tobias SejbaekDepartment of Neurology, Esbjerg Hospital, University Hospital of Southern Denmark, Esbjerg, Denmark.
Henrik Kahr MathiesenDepartment of Neurology, Copenhagen University Hospital Herlev and Gentofte, Herlev, Denmark.
Mai Bang PoulsenDepartment of Neurology, Copenhagen University Hospital North Zeeland, Hillerød, Denmark.
Nasrin AsgariDepartment of Neurology, Slagelse Hospital, University of Southern Denmark, Odense, Denmark.
Peter Vestergaard RasmussenDepartment of Neurology, Aarhus University Hospital, Aarhus, Denmark.
Morten Leif Munding StilundDepartment of Neurology, Gødstrup Hospital, Herning, Denmark.
Jakob SchäferDepartment of Neurology, Aalborg University Hospital, Aalborg, Denmark.
Signe Gro KristensenDanish Multiple Sclerosis Center, Department of Neurology, Copenhagen University Hospital - Rigshospitalet, Glostrup, Denmark.
Stephan BramowDanish Multiple Sclerosis Center, Department of Neurology, Copenhagen University Hospital - Rigshospitalet, Glostrup, Denmark.
Sara AlaDanish Multiple Sclerosis Registry, Department of Neurology, Copenhagen University Hospital -Rigshospitalet, Glostrup, Denmark.
Per Soelberg SorensenDanish Multiple Sclerosis Center, Department of Neurology, Copenhagen University Hospital - Rigshospitalet, Glostrup, Denmark.
Finn SellebjergDanish Multiple Sclerosis Registry, Department of Neurology, Copenhagen University Hospital -Rigshospitalet, Glostrup, Denmark.
Melinda MagyariDanish Multiple Sclerosis Registry, Department of Neurology, Copenhagen University Hospital -Rigshospitalet, Glostrup, Denmark.ORCID https://orcid.org/0000-0002-0972-5222

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

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.

Indexed as

epidemiologyfatiguemultiple sclerosisOutcome measurementquality of liferating scale

Identifiers

PMID42499405
PMCPMC13396549

What OpenQuestion holds

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LicenceCC BY-NC
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Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.