Patients’ Perceptions of Care Integration in Multiple Sclerosis Care in Finland: A Cross- Sectional National Survey

Background Multiple sclerosis (MS) is a chronic neurologic disease requiring long-term, multidisciplinary management. Integrated care is considered essential for treating chronic conditions, yet there is limited evidence on how people with MS (pwMS) perceive integration in their care. In Finland, MS is one of the most prevalent leading causes of disability with more than 12,000 individuals being affected by the disease. In addition, a major health and social care reform in 2023 was designed to integrate services across primary and specialized care​. This study aimed to assess pwMS perceptions of care integration and identify areas for improvement in their care pathways. Methods We conducted a national cross-sectional web-based survey in collaboration with the Finnish Neuro Society. The target population was adult pwMS in Finland, recruited via the society’s membership (N = 4122 invited). The survey (101 items) covered sociodemographics, experiences and preferences regarding care integration, and self-reported service utilization. Most survey items used response scales. Descriptive statistics were used to summarize responses. Results A total of 1,467 pwMS responded (35.6% response rate), representing ~ 12% of Finland’s MS population. The most common age group was 45–54 years old, and 79.2% were female. A majority of 64.6% reported being satisfied with the care they have received, and 32.6% rated their overall health positively. Approximately 42% reported not receiving provider-initiated follow-up in the past year, and 23.6% had left an appointment feeling unsure about the next steps. Moreover, 53.2% reported significant life challenges affecting self-care, while 25.3% had a plan co-created with healthcare personnel to address these challenges. Inter-provider communication was frequently perceived as fragmented and 40% reported that next-of-kin were never involved in their care. Conclusions By adopting a patient-centered care approach, this first nationwide survey of pwMS in Finland reveals high overall care satisfaction alongside specific areas of further improvement in care integration. Patients report fragmented communication between providers, low involvement of family support, and uncertainty about the existence of care plans. The findings underscore the need for health policy and nationwide practice initiatives to improve coordination, communication, and patient engagement in MS care. Further research is needed on the effects of, for example, dedicated care coordinators for MS and other chronic diseases.