http://doi.org/10.26347/1607-2502201809-10026-034
Objective. To assess the changes in the severity of the disease, the consumption of resources and the quality of life of patients with hemophilia during the period of the «7 ICD codes» program from 2007 to 2017. Materials and 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. The analysis of epidemiological data was carried out using descriptive statistics methods (mean, median, standard deviation, frequency), the comparative analysis in subgroups was carried out using the statistical chi-square and Student t-test.Results. For 10 years, the average age of patients with hemophilia increased from 29.1 to 36.1 years; the proportion of people who did not have bleeding in the last month increased from 11.8 to 21.1%, while the number of episodes of spontaneous hemorrhages in the last month decreased from 3.92 (σ = 1.98, median 5) to 2.59 (σ = 1.63, median 2). The median frequency of administration of IX factor is consistent with the recommendations of the approved Protocol, and VIII factor is close to the recommended. There is practically no viral hepatitis C in the age group up to 25 years, which is associated with the use of blood clotting factors until 2007, almost exclusively in children. 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.Conclusion. 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.