2023年湖南省重型β地中海贫血患者经济负担与社会服务满意度调查  

Investigation on economic burden and satisfaction of social service of severeβthalassemia patients in Hu'nan province in 2023

作　　者：王楠[1] 雷冬竹[2] 马迪 刘慧 王顺尧 张昊晴[2] WANG Nan;LEI Dong-zhu;MA Di;LIU Hui;WANG Shun-yao;ZHANG Hao-qing(School of Public Management,Hu'nan University,Hu'nan 410082,China)

机构地区：[1]湖南大学公共管理学院,湖南长沙410082 [2]郴州市第一人民医院 [3]深圳华大基因股份有限公司 [4]河北母婴基因与健康产业技术研究院 [5]湖南快乐阳光互动娱乐传媒有限公司

出　　处：《中国妇幼保健》2025年第3期399-403,共5页Maternal and Child Health Care of China

基　　金：湖南省科技计划项目(2018SK4004);河北省科技计划项目(215A9907D)。

摘　　要：目的评估湖南省重型β地中海贫血患者的经济负担,调查患者家属对现有社会服务的满意度,探讨患者家属在疾病管理过程中的主要困境以及对社会服务的期待,提出针对性的行动建议。方法以2023年湖南省重型β地中海贫血患者家庭为调查对象,通过面对面访谈和横断面问卷调查相结合的方法进行数据收集。共160例符合条件的湖南省重型β地中海贫血患者家属参与了调研。结果对于手术患者,每例患者的经济负担约为48.73万元。对于非手术患者,2023年例均总体经济负担约为114461.64元,其中直接经济负担约为82992.24元,间接经济负担约为31469.40元。手术患者初期手术费用和术后康复费用较高,后期医疗支出和经济负担逐渐减少。非手术患者面临长期持续递增的经济压力,输血和药物治疗费用逐年累积,家庭长期经济负担不断增加。患者家属对医疗服务质量、医务人员的专业性与沟通能力方面评价较高,对医疗服务便利度的评价一般。结论重型β地中海贫血患者的经济负担较重,对患者和家庭均有影响。患者家庭在长期疾病管理过程中,普遍面临医疗资源获取以及医疗服务可及性方面的困境。Objective To evaluate the economic burden of severeβthalassemia patients in Hu'nan province,survey the satisfaction of family members of patients to current social service,explore the main difficulties in the course of disease management and expectation to social service of family members of patients,and put forward corresponding suggestions.Methods The families with severeβthalassemia patients were selected as survey objects in Hu'nan Province in 2023,face-to-face interview combined with cross-sectional questionnaire survey were used to collect the data.A total of 160 family members of patients with severeβthalassemia were included into the survey.Results For the patients undergoing surgery,the economic burden of each patient was 487.3 thousand Yuan.For the patients not undergoing surgery,the total economic burden of each patient was 114461.64 Yuan in 2023,and the direct economic burden was 82992.24 Yuan,the indirect economic burden was 31469.40 Yuan.For the patients undergoing surgery,the primary surgery cost and postoperative rehabilitation cost was high,but medical cost and economic burden decreased gradually later on.For the patients not undergoing surgery,they faced long-term increasing economic pressure,blood transfusion and drug cost increased year by year,the long-term economic burden of families increased continually.The evaluation of family members of patients to medical service quality,specialization and ability to communicate of social staff was high,the evaluation to accessibility of medical service was average.Conclusion The economic burden of patients with severeβthalassemia is high,which affects the patients and their families.In the course of long-term management of disease,there are difficulties in obtaining medical source and accessibility of medical service.

关 键 词：重型Β地中海贫血 经济负担 社会服务满意度 

分 类 号：R725.5[医药卫生—儿科]