Registry as a tool for assessing economic costs of managing pediatric patients with hypertrophic cardiomyopathy

Background. Hypertrophic cardiomyopathy (HCM) is one of the most common form of cardiomyopathy in children, with an estimated annual incidence of 2.9 per 100,000 children. The management of patients with HCM requires high healthcare costs. Registry-based medical research is an important tool in assessing health care decision making. Objective. To analyze the costs of the state for the management of pediatric HCM based on the data of the pediatric patient registry. Materials and methods. The study was performed on the basis of the Department of Pediatric Cardiology and Medical Rehabilitation of the Almazov National Medical Research Centre. Currently, the electronic database includes information on 159 children with HCM, including 52 (34 %) girls. The mean age of onset of HCM was 5 years [0; 11], and 68 (44.4 %) children had the onset of myocardial hypertrophy before the age of 1 year. Medical costs included direct medical costs of drug therapy, surgical treatments (implantation of a cardioverter-defibrillator and myectomy) and hospitalization, and indirect costs which included the costs of family caregiving; social benefits due to disability, and death impact on the gross domestic product. Results. The total economic impact of HCM in the context of government spending, is RUB 107.8 million, including medical costs of RUB 27.96 million, direct nonmedical costs of RUB 13.17 million, and indirect costs of RUB 66.7 million. Indirect costs accounted for the lion’s share (61.8 %) of economic impact. Direct medical costs were 26 % of economic impact. The average impact of family caregiving accounted to RUB 11,263.89, and total value were RUB 1.04 million. Conclusion. The intermediate results of our study allow to estimate the economic impact of pediatric HCM to the state. Optimization of financial resource use will help reduce the economic impact on the state to the healthcare sector in the future.