ISSN Print 2713-0894
ISSN Online 2713-0908
Medical Ethics
BIOMEDICAL JOURNAL OF ERMC EASTERN EUROPEAN
ORIGINAL RESEARCH
Secondary progressive multiple sclerosis in Russia: problems and needs of patients, assessment of the quality of medical care through the eyes of patients and specialists
About authors
1 International Centre for Education and Research in Neuropsychiatry, Samara State Medical University, Samara, Russia
2 Samara State Medical University, Samara, Russia
3 Center of Humanitarian technologies and research «Social Dynamics», Samara, Russia
Correspondence should be addressed: Arseny Ya. Gayduk
ul. Chapayevskaya, 89, Samarskaya obl., g. Samara, 443099, Russia; a. moc.liamg@kudyag.j
About paper
Author contribution: Gayduk AI — collection, systematization and analysis of data from academic literature, text authoring, manuscript formalization; Churakov MV, Polyarnaya N. G., Sineok EV — collection, processing and analysis of socio-d emographic and clinical data; Vlasov YaV — idea, research documentation formalization and registration, manuscript editing and revision, text improvement, final approval of the manuscript for publication.
Compliance with the ethical standards: this study was approved by the Ethics Committee of the Yaroslavl State Medical University of the Ministry of Health of Russia (minutes #21 of February 8, 2018). Each participant signed and submitted the voluntary informed consent form. Adult participants filled out questionnaires voluntarily. The conducted study does not endanger the participants and complies with the biomedical ethics requirements.
Received: 2021-10-07
Accepted: 2021-11-26
Published online: 2021-12-30
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The article discusses the most unfavorable course of multiple sclerosis — the secondary progressive form. In the course of the study, conducted by a questionnaire survey of patients with secondary progressive multiple sclerosis and specialists from multiple sclerosis centers from 15 regions of Russia, medical, labor and other characteristics of patients, their problems and needs, subjective attitude to the effectiveness of therapy and rehabilitation were clarified. The main, according to doctors, defects in the organization of medical care for patients with secondary progressive multiple sclerosis have been identified. In conclusion, it was concluded that there is a significant variability in the social status and living conditions of patients with secondary progressive multiple sclerosis. The authors consider the registration in the Russian Federation of highly effective drugs for the treatment of patients with secondary progressive multiple sclerosis to be one of the most important measures.
Keywords: multiple sclerosis, secondary progressive, social activity, treatment of secondary progressive multiple sclerosis, disease-modifying therapy