中国重型血友病A患儿规律预防治疗的选择及其影响因素分析-来自中国12家血友病中心的调查和分析  

The current status and influential factors of regular prophylaxis in Chinese children with severe hemophilia A-A survey of 12 centers

作　　者：李卓[1] 肖娟[1] 赵永强[2] 李魁星[2] 周寅[1] 吴晶[3] 刘瑞奇 吴润晖 杨仁池[5] 张心声[6] 练诗梅 胡群[8] 李晓静 顾健 周荣富[11] 孙竞[12] 李长钢[13] 徐卫群[14] LI Zhuo XIAO Juan ZHO Yongqiang LI Kuixing ZHOU Yin WU Jing LIU Ruiqi WU Runhui YANG Renchi ZHANG Xinsheng LIAN Shimei HU Qun LI Xiaofing ZHOU Rongfu SUN Jing LI Changgang XU Weiqun(Department of Pediatrics Department of Hematology,Peking Union Medical College Hospital, Chinese Academy of Medical Sciences ＆ Peking Union Medical College, Beijing 100730, China School of Pharmaceutical Science and Technology, Tianjin University, Tianjin 300072 Hematology and Oncology Center, Beijing Children＇ s Hospital Affiliated to Capital Medical University, Beijing 100045 Institute of Hematology and Blood Diseases Hospital , Chinese Academy of Medical Sciences ＆ Peking Union Medical College, Tianjin 300020 Shandong center of Hemophilia Diagnosis and Treatment, Jinan 250014 Department of Hematology, Dalian Municipal Central Hospital Affiliated of Dalian Medical University, Dalian 116033 Department of Pediatric Hematology, Tongji Hospital, Tongji Medical College Huazhong University of Science ＆ Technology, Wuhan 430030 Department of Pediatric Hematology and Oncology, Chengdu women and children＇ s center Hospital, Chengdu 610091 Department of Hematology, Subei people＇s Hospital, Yangzhou 225001 Drum Tower Hospital of Nanjing University Medical School, Nanjing 210008 Department of Hematology, Southern Medical University, Guangzhou 510515 Department of Hematology and Children＇s Hospital,Shenzhen 518038 Children＇ s Hospital, School of Medicine, Zhejiang University,Hangzhou 310006)

机构地区：[1]中国医学科学院北京协和医学院北京协和医院儿科,北京100730 [2]中国医学科学院北京协和医学院北京协和医院血液科,北京100730 [3]天津大学药物科学与技术学院,天津300072 [4]首都医科大学附属北京儿童医院血液肿瘤中心,北京100010 [5]中国医学科学院北京协和医学院血液学研究所血液病医院,天津300020 [6]山东省血液中心山东省血友病诊疗中心,济南250014 [7]大连医科大学附属大连市中心医院血液科,大连116033 [8]华中科技大学同济医学院同济医院儿科血液科,武汉430030 [9]成都市妇女儿童中心医院儿童血液肿瘤科,成都610091 [10]苏北人民医院血液科,扬州225001 [11]南京大学医学院附属鼓楼医院,南京210008 [12]南方医科大学南方医院血液科,广州510515 [13]深圳市儿童医院血液肿瘤科,深圳518038 [14]浙江大学医学院附属儿童医院,杭州310006

出　　处：《中国小儿血液与肿瘤杂志》2017年第4期173-179,共7页Journal of China Pediatric Blood and Cancer

摘　　要：目的探讨医疗保险政策及慈善项目对中国重型血友病A患儿选择规律预防治疗的影响。方法 (1)对2007年11月1日至2013年5月31日期间,在中国12个血友病中心接受过Ⅷ因子规律预防治疗的重型血友病A患儿进行回顾性研究。(2)记录研究期间的各项临床资料。(3)从各中心收集重型血友病A患儿选择或放弃规律预防治疗影响因素的调查问卷。(4)查询12个中心(位于11个城市)历年的血友病相关医保政策,比较不同医保报销比例下患儿年均FⅧ使用量及自付水平。比较参加慈善援助项目及未参加慈善援助项目年均FⅧ使用量的差异。结果 (1)2008年开始出现患儿选择规律预防治疗,并且人数呈逐年增加的趋势。(2)患儿选择规律预防治疗的前三位原因为:既往按需治疗效果不理想、当地医保政策改善、患儿或家属对疾病认识提高。中途放弃规律预防治疗的主要原因为家庭经济支付能力不足。(3)研究中83.4%的患儿享受医保报销,其中80.11%患儿的医保政策年度支付上限不低于15万元,可满足其规律低剂量预防方案的医疗费用。(4)医保报销比例高的患儿年均FⅧ使用量相对较高。医保报销比例低的患儿,自付水平明显较高(P<0.05)。66.4%的患儿自付水平≥50%,其人均可支配收入的一半以上需用于支付预防治疗费用。(5)预防治疗的患儿中79.6%接受了慈善援助项目的支持。(6)2012年患儿实际年FⅧ使用量均值为30376IU(合999IU/kg),仅为全年坚持规律预防治疗理论用量的62.9%,明显低于高收入国家FⅧ使用量。结论(1)医保政策是影响中国儿童选择和坚持预防治疗的重要因素,慈善援助项目对其起到了推动作用。(2)对于低剂量预防治疗方案来讲,医保报销比例,而非年度支付上限,可能是制约患儿坚持长期规律预防治疗的重要因素。(3)目前中国儿童血友病预防治疗为短疗程、低剂量.与中高收入国家FⅧ使�Objective To investigate the effect of medical insurance and charity program on regmar prophylaxis in Chinese children with severe hemophilia A. Methods （ 1 ） From November 1, 2007 to May 31, 2013, children with severe hemophilia A and received regular prophylaxis at 12 hemophilia centers were included in the study. （2）The clinical data was retrospectively analyzed. （3）Questionnaires were collected from each center to inquire the reasonsfor beginning or giving up prophylaxis. （4）We looked up the medical insurance policy of 12 hemophilia centers （ located in 11 cities） over the years to compare the differences of annual factor VIII usage and private payment level among different Medicare reimbursement ratios. We also compared the differences of annual factor VIII usage between with or without charity assistance. Results （1） Patients began to choose prophylaxis treatment from 2008, and the number increased year by year. （2） The top three reasons for beginning prophylaxis treatment were： the effect of previous on-demand treatment was not ideal, local medical insurance policy was improved, Patients or their parents enhanced the knowledge of the disease. The main reason for giving up was lack of family economic ability. （3） Medical insurance had covered 83.4% patients in the study, 80.1% of their annual reimbursement limits were not less than 150 thousand yuan, it could meet the cost of low-dose regular prophylaxis. （4） Patients entitled to higher Medicare reimbursement ratio costed more factor VIII. Patients with lower Medicare reimbursement ratio had higherprivate payment level （ P 〈 0. 05 ）. 66. 4% patients＇ private payment level ~〉 50%, more than half of their per capita disposable income was used to pay for the prophylaxis. （5）79.6% of pediatric patients who received prophylaxis participated in charity assistance program. （6）The factor VIII use per patient in 2012 was 30376IU （999 IU/kg）,it is obviously less than that of upper and upper middl

关 键 词：血友病A 儿童 预防治疗 医疗保险 慈善项目 

分 类 号：R725.5[医药卫生—儿科]