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

BACKGROUND: Many 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.

METHODS: A 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.

RESULTS: 15 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.

CONCLUSION: People 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.