Evidence map›Paper›PMID 40082812›Full record

ArticleBMC neurology2025

Experiences and challenges of people with multiple sclerosis and low attendance to clinical follow-up: a qualitative study.

Agata Beczek, S G Roikjær, C Simonÿ, E M Landt, L Storr, M Dahl, M Beck

Abstract read
In one paragraph

Article in BMC neurology, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.

0numbers the graph read from it
0cells of the map it votes in
2citing 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

2 citing papers in PubMed.

  1. Review
  2. Article
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

7 authors.

Agata BeczekDepartment of Neurology, Zealand University Hospital, Roskilde, Denmark. abecz@regionsjaelland.dk.
S G RoikjærThe Research and Implementation Unit PROgrez, Department of Physiotherapy and Occupational Therapy, Næstved, Slagelse and Ringsted Hospitals, Slagelse, Denmark.
C SimonÿThe Research and Implementation Unit PROgrez, Department of Physiotherapy and Occupational Therapy, Næstved, Slagelse and Ringsted Hospitals, Slagelse, Denmark.
E M LandtDepartment of Clinical Biochemistry, Zealand University Hospital, Køge, Denmark.
L StorrDepartment of Neurology, Zealand University Hospital, Roskilde, Denmark.
M DahlDepartment of Clinical Medicine, University of Copenhagen, Copenhagen, Denmark.
M BeckFaculty of Health, Institute of Regional Science, University of Southern Denmark, Odense, Denmark.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundMany people with Multiple Sclerosis (MS) in Europe face limited treatment and care access. Research on the challenges faced by people who do not access specialized MS care and treatment is limited, leaving a gap in understanding the experiences and challenges of those who do not attend specialized care. Thus, we aimed to explore the experiences of people with MS who do not attend regular clinical follow-up in specialized MS clinics in Denmark, with a special focus on self-care.

methodsA qualitative study was conducted using individual interviews and thematic analysis, following Braun and Clarke's approach. Data were collected in Denmark between September 2022 and February 2024 through semi-structured interviews, guided by the interview guide development principles outlined by Kvale and Brinkmann. NVivo was used to support data management and coding during the analysis.

results15 participants were included in the study, of whom 73% were female, 53% had relapsing-remitting MS, and 60% were not receiving any treatment. 53% were using mobility aids, most of them were married, had adult children, medium education level, and were on disability pensions. Participants were evenly distributed across regions of Denmark. The analysis identified two main themes that shed light on the experiences and challenges of people with MS who do not regularly attend clinics. Theme 1, Cognitive and Bodily Disruption, highlights how participants experience cognitive and physical fragmentation, requiring constant adjusting and negotiating self-care strategies. Theme 2, Disruptions in Care Pathways, explores how aging and fragmented healthcare gaps impact self-care management.

conclusionPeople with MS who do not attend regular specialized care face physical and cognitive challenges that impact their self-care abilities. Participants experienced disruptions in care pathways with inadequate symptom management tools, felt undervalued by the health care system, and struggled with limited recognition of symptoms and disease progression, all of which hindered their ability to manage their health and daily life effectively.

Indexed as

Multiple SclerosisPatient ComplianceSelf CareAdultDenmarkFemaleFollow-Up StudiesHumansMaleMiddle AgedQualitative ResearchHealth care accessHealthcare fragmentationHealthcare gapsMultiple sclerosisPatient experiencesSelf-careSpecialized treatmentSymptom management

Identifiers

PMID40082812
PMCPMC11905644

What OpenQuestion holds

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LicenceCC BY-NC-ND
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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.