Evidence map›Paper›PMID 40409960›Full record

ArticleBMJ open2025

What matters to patients with multiple sclerosis? Identifying patient-relevant attributes using a ranking exercise with open-ended answers from an online survey in Italy.

Karin Schölin Bywall, Ulrik Kihlbom, Jennifer Viberg Johansson, Guido Pasquini, Filippo Gerli, Claudia Niccolai, Sara Della Bella, Emilio Portaccio, Matteo Betti, Maria Pia Amato and 1 more

Abstract read
In one paragraph

Article in BMJ open, 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

11 authors.

Karin Schölin BywallDepartment of Public Health Sciences, Mälardalen University, Vasteras, Sweden karin.bywall@crb.uu.se.ORCID http://orcid.org/0000-0002-5865-5590
Ulrik KihlbomDepartment of Learning, Informatics, Management and Ethics, Karolinska Institute, Stockholm, Sweden.
Jennifer Viberg JohanssonCentre for Research Ethics & Bioethics, Uppsala University, Uppsala, Sweden.
Guido PasquiniIRCCS Don Gnocchi Hospital, Firenze, Italy.
Filippo GerliIRCCS Don Gnocchi Hospital, Firenze, Italy.
Claudia NiccolaiIRCCS Don Gnocchi Hospital, Firenze, Italy.
Sara Della BellaIRCCS Don Gnocchi Hospital, Firenze, Italy.
Emilio PortaccioAOUC, Firenze, Italy.
Matteo BettiAOUC, Firenze, Italy.
Maria Pia AmatoNeuroscience, University of Florence, Firenze, Italy.
Sylvia MartinUppsala University, Uppsala, Sweden.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

objectivesThis study aimed to explore what intervention specificities or attributes newly diagnosed individuals with multiple sclerosis (MS) find important and to explore possible reasons behind their evaluations.

designA stepwise approach began with a systematic literature review to identify significant attributes. Patients with MS then assessed these attributes through an online survey, which included a ranking exercise and open-ended questions. Finally, the results were evaluated by the clinical team to select the most relevant factors for personalised care. SETTING AND

participantsFrom June 2023 to December 2023, all consecutive patients referred to the MS Center of Careggi University Hospital were screened for inclusion. Following recruitment, cognitive and physical assessments were administered at the Don Gnocchi Centre. All participants were interviewed by an experienced neuropsychologist. PROCEDURES: Participants were enrolled in the RELIABLE clinical trial, which included a ranking exercise and open-ended question. In the ranking exercise, patients prioritised levels of treatment attributes: treatment effects, methods of intervention, type of monitoring, monitoring, mode and mental support. The open-ended questions addressed the reasons behind the level rankings.

resultsParticipants' rankings revealed the most important levels of each attribute. The highest-ranked method of intervention was disease-modifying treatment, which received 164 points. For mental support, individual psychotherapy was deemed most important with 149 points. Preservation of cognitive function, a key treatment effect, received 144 points. Clinical check-ups were the top type of monitoring with 129 points. Lastly, the hybrid mode of monitoring (half remote/half in-person) was ranked with 77 points. Open-ended responses provided insights into the reasons behind these preferences, emphasising the importance of maintaining mobility, cognitive function and emotional well-being. The clinical team evaluated these findings, confirming that the selected attributes were both clinically relevant and aligned with patient priorities. This evaluation process ensured that the treatment specificities chosen for individualised care were comprehensive and reflective of patient needs.

conclusionsBy identifying and prioritising key treatment attributes, this research highlights the multifaceted nature of MS management and emphasises the importance of aligning treatment options with patient preferences. Addressing these factors through further quantitative preference assessments is essential for preventative MS care, improving patient outcomes and promoting a more patient-centred approach to treatment.

Indexed as

Multiple SclerosisAdultFemaleHumansItalyMaleMiddle AgedSurveys and QuestionnairesDecision MakingMultiple sclerosisNeurology

Identifiers

PMID40409960
PMCPMC12104910

What OpenQuestion holds

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LicenceCC BY-NC
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Registered trials

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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.