Organization of Rehabilitation Care for Patients with Multiple Sclerosis in Russia: Current State and Opportunities

Multiple sclerosis (MS) is a chronic disease of the central nervous system with significantly increasing incidence and prevalence during the past decades. More than 2.2 million patients are diagnosed with MS worldwide, about 90 thousand in Russia. The disease onset age is 20-40 years and in most cases MS leads to disability. Rehabilitation is one of the few, in some cases the only way to improve the functional state and quality of life in MS. Adequate planning and organization of rehabilitation care for MS is important for patients and the health care system as a whole. Our study aimed to analyze the accessibility, organization and quality of rehabilitation care for MS in Russia and to develop guidelines for improving them, taking into account world experience in this area. First, 17 healthcare specialists and executives and 10 patients with MS were interviewed to reveal the main problems and opportunities for MS rehabilitation in Russia. The obtained information was reconfirmed using a quantitative approach: surveys of 235 patients with MS and 392 neurologists, of whom 50 specialized in the treatment and/or rehabilitation of MS were performed. A decrease in the accessibility of rehabilitation care for MS patients was detected: among patients who needed rehabilitation, only 41.9% could access it, the main barriers to access rehabilitation were lack of information (55.1%) and financial difficulties (35.2%). It was also shown that in many cases (34.2%) there is an increase in the waiting time for rehabilitation to more than 12 weeks and an insufficient frequency of medical rehabilitation - in most cases (68.5%) patients with MS underwent rehabilitation in short courses 1- 2 times a year and less often although they almost constantly need it. The lack of a complex approach (the majority of patients received only 1-3 options), unified evidence-based rehabilitation programs for MS, a unified approaches to assess treatment outcomes, lack of continuity in patient management, and communication gap between healthcare specialists indicated a decrease in the quality of medical rehabilitation in MS: 53 % of doctors involved in the rehabilitation process said that they never or almost never discussed the issues of patient rehabilitation with colleagues. Based on the study results, we developed recommendations to improve the organization of medical rehabilitation for MS in Russia.