T.В P. Nikitina1, D.В S. Kasatkin2, D.В S. Korobro3,4, N.В M. Porfirieva5, D.В A. Lipatova5, T.В I.В Ionova1
1 sAINT-PETERSBURG sTATE uNIVERSITY hOSPITAL
2В YAROSLAVL sTATE MEDICAL UNIVERSITY
3В REGIONAL CENTER OF MULTIPLE SCLEROSIS AND OTHER AUTOIMMUNE DISEASES OF NERVOUS SYSTEM, STATE NOVOSIBIRSK REGIONAL CLINICAL HOSPITAL
4В NOVOSIBIRSK STATE MEDICAL UNIVERSITY
5В MULTINATIONAL CENTER FOR QUALITY OF LIFE RESEARCH
Opticoneuromyelitis (OM) is a disabling autoimmune disease, the various symptoms of which in a large number of cases lead to a deterioration in the quality of life (QoL), including worsening of patient’s physical and social functioning, as well as restrictions in everyday life. Taking into account the patient’s perspective regarding the disease and treatment outcomes using a special questionnaire is extremely important for providing patient-oriented medical care. The purpose of the study is to develop the Russian version of the Neuromyelitis Optica Patient-Reported Outcome Measure (NMO PROM) in accordance with international guidelines. The article concludes the results of the linguistic and cultural adaptation of the NMO PROM questionnaire, including those obtained with the participation of patients and neurologists in testing procedure. Acceptable parameters of external and content validity of the tool have been demonstrated. As a result, the final version of the NMO PROM questionnaire in Russian was approved, equivalent to the original and corresponding to the ethno-linguistic characteristics of the population, taking into account the comments of patients and specialists. To use the Russian version of the NMO PROM in clinical practice and research, it is necessary to carry out validation, which includes an assessment of its reliability, validity and sensitivity.
