贫困地区出生缺陷患者家庭的负担分析  

THE BURDEN OF BIRTH DEFECTS IN POOR AREAS

作　　者：纪颖[1] 郑晓瑛[2,3,4] 

机构地区：[1]北京大学医学部公共卫生学院社会医学与健康教育系,北京100191 [2]北京大学人口研究所 [3]世界卫生组织生殖健康合作中心 [4]北京大学中国人口健康与发展中心

出　　处：《现代预防医学》2011年第2期267-269,272,共4页Modern Preventive Medicine

基　　金：国家重点基础研究发展规划973项目(2007CB511901);北京大学“985”和“211”项目(20020903)

摘　　要：[目的]分析贫困地区出生缺陷经济负担及其特点。[方法]采用结构式访谈的方法,选择来自贫困地区的唇腭裂患者8例、先天性心脏病患者9例。[结果]单纯唇裂或腭裂的患者平均经济负担为4887元,直接医疗负担占的比重51%,但变异系数是最小的,而其他类别负担的变异系数相对较大;唇裂合并腭裂的患者平均经济负担是10021.7元,其中直接医疗负担所占比重近半;先心病患者平均经济负担为2.65万元,其中直接医疗负担占到94.8%,直接非医疗负担和间接负担的比重很低但变异程度很大。而出生缺陷对患者家庭的精神负担也是沉重的。[结论]在贫困地区,就诊的出生缺陷患者对家庭负担特点是直接负担重、间接负担轻、无形负担重,但直接非医疗负担和间接负担的变异系数要远远大于直接医疗负担,而精神负担是难以量化但却不容忽视的隐性负担。[Objective]To explore the burden of a birth defect to a family and its characteristics.[Methods]8 cleft lip with or without cleft palate（CL/P）and 9 congenital heart diseases（CHD）cases were selected to be deep interviewed.[Results]The average economic burden of cleft lip or palate was RMB 4887,in which the direct medical burden took 51 percent.But the coefficient of variation（CV）the direct medical burden was smallest among all kinds of burden.The average economic burden of cleft lip with palate was RMB 10 021.7,in which the direct medical burden took nearly a half.The burden of CHD was 26.5 thousand yuan,in which the direct medical burden took 94.8 percent,and the direct non-medical burden and indirect burden took small part in whole burden while their CV were bigger.The mental stress of the families was very heavy.[Conclusion]Large direct burden and metal stress with small indirect burden and large CV of direct non-medical burden and indirect burden were the characteristics of birth defect burden to family in poor areas,as well as the mental stress of families should not be ignored.

关 键 词：出生缺陷 经济负担 精神负担 贫困地区 

分 类 号：R722[医药卫生—儿科]