Chazova I E, Martynyuk T V, Valieva Z S, Nakonechnikov S N, Nedogoda S V, Salasyuk A S, Taran I N, Gratsianskaya S E
FSBI "National Medical Research Center of Cardiology", Moscow, Russia.
FSBI "Volgograd State Medical University", Volgograd, Russia.
Ter Arkh. 2018 Sep 20;90(9):101-109. doi: 10.26442/terarkh2018909101-109.
The aim of current study was to estimate the economic burden of the chronic thromboembolic pulmonary hypertension (CTEPH) in Russia based on patient registry.
Cost of illness study was based on data derived from CTEPH patient registry that was developed at the Division of hypertension of FSBI "National Medical Research Center of Cardiology". Demographic and clinical patient characteristics were analyzed with descriptive statistic methods. Cost of illness study was performed from the state perspective and with bottom-up approach. Bootstrapping was used for calculation of average costs per patient/year. Within the study direct costs (medical costs: outpatient, inpatient, emergency, PAH-specific therapy, concomitant therapy; non-medical costs: pension due to disability status, payments for patients on sick-leave) and indirect costs (loss in GDP) were estimated.
Overall, 113 CTEPH patients (67 women and 46 men) from 33 Russian regions were included, mean age of patients with CTEPH was 54.6±13.95 years. Most of the patients (55%) were in able-bodied age. It was found that about half of patients with diagnosed CTEPH had a disability. Average duration of disease at the time of analysis was 6.88±11.41 years. Period from the first occurrence of symptoms to the confirmation of diagnosis of CTEPH was 2.58±5.21 years on average. More than 70% of patients had III and IV FC (WHO) at the time of diagnosis. Mean number of outpatient visits was 1.97±1.65 per patient/year, and inpatient visits were reported for 59% of patients. About 54% of patients used PAH-specific therapy, moreover 46% patients had interruptions of PAH-specific therapy (58.4±66.3 days). The total costs of CTEPH per patient/year were calculated as 805,901 RUB. The overall burden of CTEPH in Russia for total CTEPH population (470 patients) was 379 million RUB per year.
CTEPH is the rare disease that is characterized with later diagnosis due to absence of disease-specific symptoms. Therefore economic burden of the CTEPH is significantly low in comparison to widespread cardiovascular diseases. Development of network of expert PH-centers and increase of the access for PAH-specific therapy will help to increase the quality of health care for patients with CTEPH.
本研究旨在基于患者登记数据评估俄罗斯慢性血栓栓塞性肺动脉高压（CTEPH）的经济负担。
疾病成本研究基于俄罗斯联邦国家预算机构“国家心脏病医学研究中心”高血压科建立的CTEPH患者登记数据。采用描述性统计方法分析患者的人口统计学和临床特征。疾病成本研究从国家角度采用自下而上的方法进行。采用 Bootstrap 方法计算每位患者每年的平均成本。在研究中，估计了直接成本（医疗成本：门诊、住院、急诊、肺动脉高压特异性治疗、伴随治疗；非医疗成本：因残疾状况领取的养老金、病假患者的补贴）和间接成本（国内生产总值损失）。
总体而言，纳入了来自俄罗斯33个地区的113例CTEPH患者（67例女性和46例男性），CTEPH患者的平均年龄为54.6±13.95岁。大多数患者（55%）处于工作年龄。发现约一半确诊的CTEPH患者有残疾。分析时疾病的平均持续时间为6.88±11.41年。从首次出现症状到确诊CTEPH的平均时间为2.58±5.21年。超过70%的患者在诊断时为世界卫生组织（WHO）心功能III级和IV级。每位患者每年的门诊就诊平均次数为1.97±1.65次，59%的患者有住院就诊记录。约54%的患者使用肺动脉高压特异性治疗，此外，46%的患者中断过肺动脉高压特异性治疗（58.4±66.3天）。每位患者每年CTEPH的总成本计算为805,901卢布。俄罗斯CTEPH总人群（470例患者）的CTEPH总体负担为每年3.79亿卢布。
CTEPH是一种罕见疾病，由于缺乏疾病特异性症状，诊断较晚。因此，与常见的心血管疾病相比，CTEPH的经济负担显著较低。建立专家肺动脉高压中心网络并增加肺动脉高压特异性治疗的可及性，将有助于提高CTEPH患者的医疗质量。
