广东省中重型地中海贫血患者疾病经济负担分析

Analysis of economic burden of major and intermedia thalassaemia in Guangdong Province

目的广东省为地中海贫血基因高携带率地区,中重型地中海贫血给患者、家庭和社会带来沉重的负担。文中将系统评估广东省中重型地中海贫血患者的疾病经济负担。方法选取广东省8个地市作为取样点,收集中重型地中海贫血患者45例作为调查对象。了解患者的疾病经济负担,包括直接经济负担、间接经济负担和无形经济负担。直接经济负担用患者门诊费、住院费、营养费和交通费的总和表示,间接经济负担用患者的伤残调整寿命年(disability adjusted life years,DALY)结合人力资本法测算,无形经济负担用支付意愿法计算。结果 45例地中海贫血患者的人均年直接经济负担为43 058.66元,人均年间接经济负担为20 474.51元,人均无形经济负担为302 466.67元。结论中重型地中海贫血患者直接、间接、无形疾病经济负担均相当沉重,建议采取措施降低患者家庭负担,使其有经济能力进行规范治疗。

Objective There is a high occurrence rate of thalassaemia in Guangdong Province. Major and intermedia thalassaemia bring severe burden for patients,families,and societies. This study aimed to reveal the economic burden of thalassaemia major and intermedia thalassaemia in Guangdong Province. Methods Eight areas of Guangdong Province were selected as the sampling areas. Patients with major or intermedia thalassaemia were enrolled in the study. The patients＇ economic burden of this disease,including direct economic burden,indirect economic burden and intangible economic burden was calcultated. The direct economic burden was estimated by outpatient fee,hospitalization expense,nutrition and transportation fees,indirect economic burden was evaluated using disability adjusted life years（ DALY） combined with human capital,and intangible economic burden was calculated using method of willingness. Results Per average annual direct economic burden of 45 patients with major or intermedia thalassaemia was43 058. 66 yuan,per average annual indirect economic burden was 20 474. 51 yuan,and per person intangible economic burden was302 466. 67 yuan. Conclusion Economic burden of major and intermedia thalassaemia is huge and most patients do not receive standardized treatment. More effective way should be taken to reduce the economic burden of thalassaemia and help the patients to receive standardized treatment.