北京地区儿童血友病综合关怀模式的建立与开展  

The establishment and development of the comprehensive care model for hemophiliac children in Beijing area

作　　者：吴心怡[1] 吴润晖[1] 王春立[1] 甄英姿[1] 唐凌[1] 王岩[2] 

机构地区：[1]儿童血液病与肿瘤分子分型北京市重点实验室儿科学国家重点学科首都医科大学附属北京儿童医院血液肿瘤中心,北京100045 [2]北京儿童医院康复中心

出　　处：《中国小儿血液与肿瘤杂志》2015年第4期198-202,207,共6页Journal of China Pediatric Blood and Cancer

基　　金：国家自然科学基金(项目编号:81341018)

摘　　要：目的探讨儿童血友病综合关怀模式在血友病患儿及家庭管理中的作用和意义。方法通过成立血友病综合关怀团队，对血友病患儿实施综合关怀模式，了解血友病患儿的生存质量，并发症发生率以及家庭治疗开展情况。结果2006年1月-2014年12月接受血友病综合关怀模式的114例患儿中，3岁～6岁血友病患儿入托率为80％；6岁～18岁患儿入学率100％；31．6％患儿进行长期预防治疗；仅有34．1％的患儿在校（含幼儿园）期间不参加体育锻炼，29．8％患儿存在靶关节／慢性血友病性滑膜炎，37．7％患儿发生过关节出血；2010年北京市将血友病列入（门诊）大病报销范围；年度首诊患儿较综合关怀模式开展前增加33倍。结论北京地区血友病综合关怀模式的开展提高了患儿的生存质量，降低了并发症的发生率，促进了预防性注射和家庭治疗的开展，缩短了疾病的诊断时间。Objective To investigate the effect and meaning of the comprehensive care model for children with hemophilia and their families. Methods The qualities of life, incidence rates of complication and family therapy situations were surveyed through comprehensive care by setting up comprehensive care team for hemophiliac children. Results Among 114 hemophiliac children receiving comprehensive care from January 2006 to September 2014, the kindergarten rate for hemophiliac children aged from 3 to 6 years old was 80%, the enrollment rate for hemophiliac children aged from 6-18 years old was 100%. There was 36. 1% hemophiliac children receiving prevention treatment, only 34. 1% hemophiliac children dropped out of physical exercises at school （including kindergarten）. There was 29.8% hemophiliac children suffering from target joint/chronic hemophilic arthromeningitis, and 37.7% hemophiliac children ever had arthrorrhagia. Hemophilia had been included in the reimbursement as serious illness in 2010, and the number of first-diagnosis of hemophiliac patients increased 33 folds in one year compared with the year before the administration of comprehensive care model. Conclusions Comprehensive care model for hemophiliac children in the region of Beijing help the children with hemophilia to improve the life quantities, decrease incidence rates of complication, promote the preventing injection and family treatment, and accelerate the timeliness for disease diagnosis.

关 键 词：血友病 综合关怀模式 北京地区 家庭治疗 

分 类 号：R725.5[医药卫生—儿科]