Challenges in the Management of Care for Patients with Multiple Sclerosis: A Qualitative Study from the Perspectives of Patients, Family Caregivers, and Healthcare Providers

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Abstract

Background : Multiple sclerosis (MS) is a chronic, progressive, and disabling autoimmune disease of the central nervous system that requires continuous, coordinated, and multidimensional care. Despite advancements in medical science, patients still face numerous barriers in accessing effective care. This study aimed to identify the challenges of MS care management from the perspectives of patients, family caregivers, and healthcare providers. Methods : This descriptive qualitative study was conducted in Iran from 2024 to 2025 using purposive sampling. Data were collected through 50 semi-structured interviews with patients diagnosed with MS, family caregivers, and healthcare professionals. Data were analyzed using the Lundman and Graneheim content analysis approach, supported by MAXQDA 2020 software. Results : Inductive analysis yielded two main categories, seven subcategories, and 24 sub-subcategories. The two main categories were: (1) structural and professional barriers in the management of care services, and (2) Challenges faced by patients and family caregivers in the care process. Conclusion : The findings revealed that MS care is hindered by various structural, professional, and managerial barriers within the healthcare system, including a Shortage of specialized human resources, inadequate infrastructure, poor insurance coverage, poor interprofessional coordination, and fragmented referral and follow-up systems. In addition, psychologicalburden on patients and caregivers, misconceptions, social stigma, and physical barriers such as transportation difficulties negatively impact continuity of care and quality of life. These results highlight the need for policy reforms, interdisciplinary team training, home-based care expansion, insurance improvements, and patients and their families to enhance care quality and reduce the psychological and financial burden on patients and families.

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