Forghani Siamak Farokh, Jahangiri Reza, Ghasemi Farzaneh, Shirani Reza, Bagheri Hosein, Mahmoodi Razieh, Bagheri Faradonbeh Saeed
Burn Research Center, Iran University of Medical Sciences, Tehran, Iran.
Health Management and Economics Research Center, Iran University of Medical Sciences, Tehran, Iran.
Med J Islam Repub Iran. 2021 Nov 3;35:146. doi: 10.47176/mjiri.35.146. eCollection 2021.
Epidermolysis bullosa (EB) is prevalent in Iran and incurs direct and indirect costs on the health care system and the patient. Therefore, this study was conducted to estimate the economic burden of this disease in Iran. This study includes all patients with EB disease who had been referred to the medical centers of Iran in 2019-2020 for treatment of their disease, especially Hazrat Fatimah Hospital and their medical records are available in Iran EB Patients Association (IEBPA). In estimating the economic burden of diseases and costing studies, we calculated the average direct and indirect costs for a patient and used it to estimate the costs of the patient population. In this study, a prevalence approach was used to calculate the economic burden of this disease. For this purpose, the existing cases of the disease in 2019-2020 were calculated. The data collected from the questionnaires that were completed through interviews with patients as well as the data extracted from the review of their files were entered into Excel software and analyzed. The total direct medical costs of direct non-medical and indirect are equal to 7.319.428.315 & 5.390.440.775 and 45.875.654.514 Rials respectively, and the total economic burden of the disease and the average of each patient is 58.585.514.604 and 155.890.789 respectively. High indirect costs, especially informal care, represent the socio-economic burden of this disease and constitute more than half of the total indirect costs. Therefore, the obvious gap and hidden social costs of this disease are related to health policymakers, especially when they want to study the impact of this disease on different income classes of families.
大疱性表皮松解症（EB）在伊朗很普遍，给医疗系统和患者带来了直接和间接成本。因此，本研究旨在估算伊朗这种疾病的经济负担。本研究纳入了2019年至2020年期间因疾病治疗而转诊至伊朗医疗中心的所有EB病患者，特别是法蒂玛医院的患者，其病历可在伊朗EB患者协会（IEBPA）获取。在估算疾病的经济负担和成本研究中，我们计算了每位患者的平均直接和间接成本，并用于估算患者群体的成本。在本研究中，采用患病率方法来计算这种疾病的经济负担。为此，计算了2019年至2020年该疾病的现有病例数。通过与患者访谈完成的问卷收集的数据以及从其病历审查中提取的数据被输入到Excel软件中进行分析。直接非医疗和间接的总直接医疗成本分别等于7319428315里亚尔、5390440775里亚尔和45875654514里亚尔，该疾病的总经济负担和每位患者的平均值分别为58585514604里亚尔和155890789里亚尔。高昂的间接成本，尤其是非正式护理，代表了这种疾病的社会经济负担，占间接成本总额的一半以上。因此，这种疾病明显的差距和隐藏的社会成本与卫生政策制定者有关，尤其是当他们想要研究这种疾病对不同收入家庭阶层的影响时。
