OBJECTIVES : To assess the quality of life of patients with hemophilia and estimate the level of consumption of medical resources associated with the treatment during the period of the "7 ICD codes" program from 2007 to 2017.

METHODS : Long-term study of the population of Russian patients with various forms of hemophilia was carried out from 2007 to 2017. The feature of the study is that it continues the studies conducted in 2007-2010. The questionnaire was sent by mail to 1599 patients with hemophilia. The parameters of the effectiveness of therapy, its economic features and the quality of life of patients were studied. Health-related quality of life was assessed with self-administrated validated version of Russian version of Euroqol-5D questionnaire, comprising a dimensions of health and visual-analog scale. Statistical analysis of data was performed with χ² and Student’s criteria.

RESULTS : The average assessment of patients with quality of life according to the visual-analogue scale of the EQ-5D questionnaire is 60.9 (σ = 20.3), the median of the quality of life assessment has increased from 60 in 2007 to 65 in 2017. Among patients with antibodies to coagulation factors, recombinant preparations of coagulation factors are used 4 times more often than in the general population of patients with hemophilia. Direct costs for the year of "on demand" treatment for a patient with hemophilia without antibodies to coagulation factors are 2.4 million rubles, for "preventive treatment" - 3.6 million rubles.

CONCLUSIONS : To receive the 1st additional year of quality life (QALY), additional costs of 11,000 rubles are required for preventive treatment, which is 0.5% of the level of costs.