Evidence map›Paper›PMID 41549256›Full record

ArticleBMC neurology2026

Development of a self-management journey map for people with multiple sclerosis: a qualitative study.

Na Yin, Cuijing Li, Jie Zhao, Yongxin Cao, Jingyi Xu, Xuan Wang, Xiaohan Liu, Hong Chang

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PubMed Full text at PMC Publisher
In one paragraph

Article in BMC neurology, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

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0citing papers in PubMed
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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

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3 · Its place in the literature

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No citing paper in PubMed yet.

4 · The record

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5 · Who and what money

Authors and funding

8 authors.

Na Yin *Department of Neurology, Xuanwu hospital Capital Medical University, No.45 Changchun Street, Beijing, 100053, China.
Cuijing Li *Department of Neurology, Xuanwu hospital Capital Medical University, No.45 Changchun Street, Beijing, 100053, China.
Jie ZhaoDepartment of Neurology, Xuanwu hospital Capital Medical University, No.45 Changchun Street, Beijing, 100053, China.
Yongxin CaoDepartment of Neurology, Xuanwu hospital Capital Medical University, No.45 Changchun Street, Beijing, 100053, China.
Jingyi XuDepartment of Neurology, Xuanwu hospital Capital Medical University, No.45 Changchun Street, Beijing, 100053, China.
Xuan WangDepartment of Neurology, Xuanwu hospital Capital Medical University, No.45 Changchun Street, Beijing, 100053, China.
Xiaohan LiuDepartment of Neurology, Xuanwu hospital Capital Medical University, No.45 Changchun Street, Beijing, 100053, China.
Hong ChangDepartment of Neurology, Xuanwu hospital Capital Medical University, No.45 Changchun Street, Beijing, 100053, China. changhong19791111@126.com.

Funding

Beijing Municipal Health Commission BRWEP2024W022010106National Clinical Research Centers 303-01-001-0272-10
6 · The paper itself

Abstract

backgroundMultiple sclerosis (MS) is an incurable disease and requires active patient participation. Its complex progression needs dynamic self-management. Yet the stage-specific experiences and needs of people with MS (PwMS) remain unexplored and a clear, patient-centered care pathway across different disease stages is lacking.

aimsTo map the patient journey from PwMS perspectives, visualize their self-management experiences and needs, identify key intervention targets, and enhance PwMS’s life quality through medical care cooperation.

methodsThis study employed a qualitative descriptive design using a patient journey mapping approach, adhering to the Standards for Reporting Qualitative Research (SRQR). A total of 16 PwMS were recruited through purposive sampling, and 18 in-depth, semi-structured interviews were conducted (March to June 2025). Data were analyzed via qualitative content analysis, guided by the structured process described by Graneheim and Lundman.

resultsPwMS exhibited stage-specific variations in self-management needs. Specifically, during the diagnostic phase, patients demonstrated urgent needs for early diagnostic literacy, disease knowledge acquisition, family emergency coping strategies, and standardized management. In the acute phase, gaps include insufficient treatment knowledge and a strong demand in treatment decision-making. During the remission phase, patients’ primary gaps focus on standardized use of disease-modifying therapy (DMT) drugs, systemic disease monitoring, and early relapse detection. Additionally, the emotional trajectory mapped in the journey map reveals that psychological and emotional issues exist throughout the entire course and require consistent attention.

conclusionThe patient journey map clearly delineates the dynamic evolution of self-management needs in PwMS, visually representing these shifting priorities. Future research should focus on developing adaptive support systems capable of dynamically responding to multifaceted challenges. This can be achieved by refining population stratification for targeted interventions and establishing a continuous care model, ultimately enhancing the quality of life for PwMS.

Indexed as

Multiple SclerosisSelf-ManagementAdultFemaleHealth Knowledge, Attitudes, PracticeHumansMaleMiddle AgedQualitative ResearchQuality of LifeMultiple sclerosisPatient journey mapQualitative researchSelf-management

Identifiers

PMID41549256
PMCPMC12895627

What Socratic holds

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LicenceCC BY-NC-ND
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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 Socratic graph.