CAJ | 학술논문

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43058．66元，人均年间接经济负担为20474．51元，人均无形经济负担为302466．67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。
목적：광동성위지중해빈혈기인고휴대솔지구，중중형지중해빈혈급환자、가정화사회대래침중적부담。문중장계통평고광동성중중형지중해빈혈환자적질병경제부담。방법선취광동성8개지시작위취양점，수집중중형지중해빈혈환자45례작위조사대상。료해환자적질병경제부담，포괄직접경제부담、간접경제부담화무형경제부담。직접경제부담용환자문진비、주원비、영양비화교통비적총화표시，간접경제부담용환자적상잔조정수명년（ disability adjusted life years ， DALY）결합인력자본법측산，무형경제부담용지부의원법계산。결과45례지중해빈혈환자적인균년직접경제부담위43058．66원，인균년간접경제부담위20474．51원，인균무형경제부담위302466．67원。결론중중형지중해빈혈환자직접、간접、무형질병경제부담균상당침중，건의채취조시강저환자가정부담，사기유경제능력진행규범치료。
Objective There is a high occurrence rate of thalassaemia in Guangdong Province .Major and intermedia thalas-saemia 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 ar-eas.Patients with major or intermedia thalassaemia were enrolled in the study .The patients′economic burden of this disease , inclu-ding 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 u-sing 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 was 43 058.66 yuan, per average annual indirect economic burden was 20 474.51 yuan, and per person intangible economic burden was 302 466.67 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 re -ceive standardized treatment .