Clinical and social study and assessment of quality of life in patients with neuromyelitis optica spectrum disorders

Neuromyelitis optica spectrum disorders (NMOSD, formerly known as opticoneuromyelitis or Devic's disease) are severe chronic autoimmune inflammatory diseases of the central nervous system (CNS) associated with high disability in the absence of adequate treatment. In Russia, no assessment of the medical and social characteristics of this disease and the quality of life of patients has been conducted, which complicates the assessment of the prognosis and the development of medical and social management strategies for these patients. Objective : to analyse the medical and social characteristics and quality of life of patients diagnosed with NMOSD (opticoneuromyelitis). Material and methods . The condition of patients with a confirmed diagnosis of NMOSD or opticoneuromyelitis was assessed using a specially designed questionnaire, which also included questions about patients' attitudes towards their health. The SF-36 international quality of life questionnaire was used to score quality of life. Based on the results of the study, 280 patients diagnosed with NMOSD were surveyed in 21 regions of the Russian Federation. Results. Most patients with NMOSD who are observed by neurologists receive specialised treatment, but half of all patients with NMOSD currently experience some difficulties in obtaining drug therapy. Over the past year, 28.6% of respondents reported an improvement in their health, 39.6% reported no change, and 31.8% reported a deterioration. Self-assessment of health status declines sharply in patients over 55 years of age. The majority (74%) of patients report a decline in vision. Every second patient noted a decrease in vision at the onset of the disease. Severe movement disorders are characteristic, and for the majority (91%) of patients with NMOSD, strenuous physical activities such as running and weight training are not possible. Patients with disability groups I or II are more limited in their physical and mental resources. Patients receiving treatment significantly better assess changes in their health over the past year, both physical and psychological. Those who receive specialized drug therapy have a much better perception of their own health and its prospects. The SF-36 quality of life indices for NMOSD are significantly lower than normal, primarily in terms of physical condition, but also in terms of psychological well-being. Conclusion . In NMOSD, there are pronounced changes in the quality of life of patients, both according to the original questionnaire and according to the SF-36 scale. Receiving timely and adequate treatment significantly improves these indicators and the prognosis.