Results of a study of the quality of life in patients with highly active multiple sclerosis in Russia

Abstract

Multiple sclerosis (MS) is a chronic autoimmune inflammatory demyelinating and neurodegenerative disease of the central nervous system. Now 2.8 million people in the world suffer from MS, since 2000 every 5 years there has been an increase in the number of MS patients by 10%. At the same time, the number of cases with highly active MS (HAMS) is increasing, i.e. cases of MS with two or more exacerbations without taking specific pathogenetic therapy or one exacerbation during taking MS disease-modifying therapies (DMTsMS), which is accompanied by the corresponding MRI data of the brain and spinal cord (presence of new or active lesions). Previously, there were no studies of quality of life (QoL) in this subgroup of patients in the world.Objective: to compare the QoL indicators of patients with HAMS with those of healthy people and patients with a typical course of relapsingremitting MS (RRMS).Patients and methods. The study included data on 518 patients from 14 regions of the Russian Federation for 2020–2021 years, in whom HAMS was confirmed during a second examination. We used the results of the analysis of clinical data from neurologists and data from questionnaires filled out by patients with HAMS. Two questionnaires were used in the work – the general (non-specific) Questionnaire for assessing the QoL, SF-36 (The MOS 36-item Short-Form Health Survey) and a special questionnaire for MS patients – MusiQoL (Multiple sclerosis Quality of Life).Results and discussion. Almost all indicators of QoL in HAMS were below the control. When compared with the typical course of RRMS, a more pronounced decrease in daily activity indicators, a significant impact of clinical symptoms on QoL, a negative attitude of patients towards the healthcare system, and a low overall health index were noted. Pearson correlation analysis revealed a stronger effect on QoL parameters of the frequency of exacerbations in HAMS than in RRMS.Conclusion. The data obtained in the study indicate the need for more active management of patients with HAMS using second-line DMTsMS.