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

BACKGROUND: Multiple 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. AIMS: To 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. METHODS: This 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. RESULTS: PwMS 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. CONCLUSION: The 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.