Abstract

Evaluation of the economic burden of the chronic thromboembolic pulmonary arterial hypertension (CTEPH) in Russia was the aim of current work. Study was based on data derived from CTEPH patient registry (10 clinical centers). Study was based on data derived from CTEPH patient registry (10 clinical centers). Methods of descriptive statistics were used in analysis of clinical data. Bootstrapping was applied for estimation of average costs per patient/year. Analysis included direct costs (medical costs: outpatient visits, hospital admissions, emergency, PAH-specific therapy, concomitant therapy; non-medical costs: pension due to disability, payments to patients on sick-leave) and indirect costs (loss of GDP) were calculated. CTEPH patients (n=113) aged 54.6±13.95 years, and 59.3% were women. Duration from first symptoms to the confirmation of diagnosis of CTEPH was 2.58±5.21 years on average. Most of the patients (55%) were in able-bodied age and about a half of patients had a disability. Mean number of outpatient visits and inpatient visits were 1.97±1.65 and 1.01±1.36 per patient/year, respectively. About 54% of patients applied PAH-specific therapy, moreover 46% patients had interruptions of PAH-specific therapy (58.4±66.3 days). The mean annual total costs were 805,901 RUB/11,060 EUR per patient (73.3% PAH-specific therapy, 10.3% inpatient costs, 0.3% outpatient costs, 2.7% concomitant therapy, 5.3% non-medical costs, 8.6% loss of GDP). The overall burden of CTEPH in Russia for total projected CTEPH population (approximately 470 patients) was estimated as 378,579,946 RUB/ 5,195,723 EUR per year. Current study demonstrated that, in overall, the economic burden of CTEPH is lower than costs for other widespread cardiovascular diseases due to rarity of CTEPH. The registry is a valuable tool for studying costs associated with disease and in the identification of problems in health care framework for rare diseases.

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