Challenges of patients with multiple sclerosis in receiving health care services in Iran

Background: Multiple sclerosis (MS) is a debilitating, non-traumatic, neurological disorder in young adults and can reduce quality of life (QoL) by interfering with the ability to work, leisure activities, and routine living tasks. Various studies have shown the dissatisfaction of people with MS in different areas of care services. Regarding the patients’ dissatisfaction with care services, in this study, we sought to identify the care challenges of MS patients in Iran.  Methods: This cross-sectional study was conducted in 2016-2018 using a researcher-made questionnaire (designed by MS Specialists in an MS research center). The questionnaire examines the care challenges in four areas: 1) costs of medication, hospitalization, and rehabilitation services, 2) family support, insurance system, and job protection, 3) access to transportation system and treatment team, 4) quality of the provided care and services. Results: Completed questionnaires were received from 945 respondents. The mean age of responders was 35.92 years. In total, 731 (77.8) participants were women and 208 (22.2) were men. Academic education was reported among 615 (65.3) participants and 367 (40.2) were employed during the study, while 99 (10.5) of the subjects were not able to walk a minimum of 20 meters. The prioritization of care services challenges is as follows: the cost of pharmaceutical services (49.1), lack of telephone counseling (47.4), uninsured home rehabilitation (44.7), lack of qualified care centers (41.2), and rehabilitation costs (40.2). Conclusion: We found that patients who could not walk at least 20 meters and unemployed individuals had more problems and lower QoL. The patients who had non-academic education had more challenges with the cost of medication, transportation, and lack of familial support. This study shows the challenges of MS patients in receiving health care in Iran that vary in age, education, employment, and ability to walk. As the abovementioned challenges are of great importance in determining the QoL of people with MS, an appropriate solution is provided in this study to overcome these challenges.