Evidence map›Paper›PMID 40468538›Full record

ArticleEuropean journal of neurology2025

Confirmed Worsening of Health-Related Quality of Life to Monitor Long-Term MS Disease Progression: A Longitudinal Analysis From the Swiss Multiple Sclerosis Registry.

Stefania Iaquinto, Benjamin Victor Ineichen, Mina Stanikić, Jens Kuhle, Christian Philipp Kamm, Pasquale Calabrese, Patrick Roth, Claudia Baum, Chiara Zecca, Claudio Gobbi and 4 more

Abstract readEvaluation Study
PubMed Full text at PMC Publisher
In one paragraph

Article in European journal of neurology, 2025. 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

14 authors.

Stefania IaquintoDepartment of Epidemiology, Epidemiology, Biostatistics and Prevention Institute, University of Zurich, Zurich, Switzerland.ORCID 0000-0001-5808-9026
Benjamin Victor IneichenDepartment of Clinical Research, University of Bern, Bern, Switzerland.
Mina StanikićDepartment of Epidemiology, Epidemiology, Biostatistics and Prevention Institute, University of Zurich, Zurich, Switzerland.ORCID 0000-0002-6477-7164
Jens KuhleDepartment of Neurology, University Hospital Basel and University of Basel, Basel, Switzerland.
Christian Philipp KammDepartment of Neurology, Inselspital, University Hospital Bern and University of Bern, Bern, Switzerland.
Pasquale CalabreseNeuropsychology and Behavioral Neurology Unit, Division of Cognitive and Molecular Neuroscience, University of Basel, Basel, Switzerland.
Patrick RothDepartment of Neurology, University Hospital Zurich, Zurich, Switzerland.
Claudia BaumRehabilitation Clinic Zihlschlacht, Zihlschlacht, Switzerland.
Chiara ZeccaDepartment of Neurology, Neurocenter of Southern Switzerland, Ospedale Regionale di Lugano, EOC, Lugano, Switzerland.ORCID 0000-0002-9990-3431
Claudio GobbiDepartment of Neurology, Neurocenter of Southern Switzerland, Ospedale Regionale di Lugano, EOC, Lugano, Switzerland.ORCID 0000-0002-7554-0664
Özgür YaldizliNeurology Clinic and Policlinic, Department of Head, Spine and Neuromedicine, MS Center and Research Center for Clinical Neuroimmunology and Neuroscience Basel (RC2NB), Clinical Research and Biomedical Engineering, University Hospital Basel and University of Basel, Basel, Switzerland.ORCID 0000-0002-0800-4845
Milo Alan PuhanDepartment of Epidemiology, Epidemiology, Biostatistics and Prevention Institute, University of Zurich, Zurich, Switzerland.
Viktor von WylDepartment of Epidemiology, Epidemiology, Biostatistics and Prevention Institute, University of Zurich, Zurich, Switzerland.
Swiss Multiple Sclerosis Registry

Funding

Schweizerische Multiple Sklerose Gesellschaft
6 · The paper itself

Abstract

backgroundMonitoring multiple sclerosis (MS) progression traditionally relies on clinical measures, which may overlook symptoms affecting quality of life. Incorporating patient-reported outcomes could improve the understanding of disease worsening.

objectiveTo evaluate an EQ-5D-based algorithm for detecting disease worsening and compare it with EDSS worsening.

methodsWe analyzed longitudinal EQ-5D and EDSS data from the Swiss MS Registry. EQ-5D worsening was defined as a sustained decline over two assessments; EDSS worsening followed established clinical criteria. Time to confirmed worsening was assessed using Kaplan-Meier curves and Cox regression. Patterns in 12 self-reported symptoms were examined using descriptive statistics and logistic regression.

resultsBy year four, 4.5% experienced EQ-5D worsening, while 15.8% experienced EDSS worsening. Faster time to EQ-5D worsening was associated with walking aids or higher BMI at baseline. Conversely, faster time to EDSS worsening was associated with male sex, progressive MS, or spasms as the first symptom. Symptom frequency was higher in the EQ-5D worsening group, with pain and depression independently associated, while no symptoms were associated with EDSS worsening. DISCUSSION: While EQ-5D worsening does not serve as an early clinical marker of disease progression, it may complement EDSS by capturing additional aspects of disease progression, particularly symptoms impacting HRQoL, that are not reflected in EDSS progression. Long-term HRQoL monitoring alongside traditional measures may improve MS progression assessment and patient-centered care.

Indexed as

Disease ProgressionMultiple SclerosisPatient Reported Outcome MeasuresQuality of LifeSymptom AssessmentAdultAlgorithmsFemaleHumansKaplan-Meier EstimateLogistic ModelsLongitudinal StudiesMaleMiddle AgedProportional Hazards ModelsRegistriesdisease progressionEQ‐5Dhealth‐related quality of lifemultiple sclerosisoutcome measurement

Identifiers

PMID40468538
PMCPMC12137183

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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.