河南省血友病患者情况调查及现状分析  

Survey and analysis of the current status of hemophilia patients in Henan Province

作　　者：丁冰洁 刘柳[2] 宋雪雯 李梦娟 夏傲 刘静远 周虎 Ding Bingjie;Liu Liu;Song Xuewen;Li Mengjuan;Xia Ao;Liu Jingyuan;Zhou Hu(Department of Hematology,The Affiliated Cancer Hospital of Zhengzhou University&Henan Cancer Hospital,Zhengzhou 450008,China;Department of Hematology,The First Affiliated Hospital of Zheng-zhou University,Zhengzhou 450052,China)

机构地区：[1]郑州大学附属肿瘤医院/河南省肿瘤医院血液科,郑州450008 [2]郑州大学第一附属医院血液内科,郑州450052

出　　处：《血栓与止血学》2024年第5期212-217,共6页Chinese Journal of Thrombosis and Hemostasis

基　　金：国家自然科学基金(81370615,82070120,81600097)。

摘　　要：目的调查分析河南省内1310例血友病患者的临床表现特点及生活状况,为制定本省公共卫生政策提供依据。方法查阅河南省血友病患者登记信息、发放调查问卷、电话访问,对收集到的资料进行分析。结果1310例血友病患者均为男性,来自河南省18个市、地区,未成年患者占51.37%(673/1310),成年患者占48.63%(637/1310)。血友病A型占87.79%(1150/1310),血友病B型占12.21%(160/1310);其中重型74.81%(980/1310)、中间型21.3%(279/1310)、轻型3.89%(51/1310)。有过抑制物的患者占13.51%(177/1310)。42.98%(563/1267)的患者接受预防治疗,53.74%为按需治疗。80.69%(1057/1310)的患者年出血4次及以上。已残疾及关节病变患者占91.68%(1201/1310)。73.66%(965/1310)的患者表示该病对生活有严重影响。88.93%(1165/1310)的患者表示该病对家庭经济造成了严重影响。49.39%(647/1310)的患者为低保或贫困户。结论河南省血友病患者以重型患者居多,预防治疗不足,关节病变及致残率高,急需建立本省血友病分级诊疗体系,加强和规范血友病患者预防治疗。Objective To investigate and analyze the clinical features and living conditions of hemophilia patients in Henan province,and to provide evidence for making public health policy in Henan province.Methods The data of hemophilia patients in Henan provincewere collected and analyzed by consulting registration information,issuing questionnaires and telephone interviews.Results 1310 hemophilia patients were male,from 18 cities and regions in Henan Province.51.37%(673/1310)were juveniles and 48.63%(637/1310)were adults.Hemophilia A accounted for 87.79%(1150/1310),hemophilia B accounted for 12.21%(160/1310).Patients with severe hemophilia accounted for 74.81%(980/1310),intermediate hemophilia for 21.3%(279/1310),and mild hemophilia for 3.89%(51/1310).13.51%(177/1310)of patients had an inhibitor.According to the type of treatment,42.98%(563/1267)of patients received preventive treatment and 53.74%received on⁃demand treatment.80.69%(1057/1310)patients had more than 4 times of bleeding per year.The patients with disability and joint disease accounted for 91.68%(1201/1310).73.66%(965/1310)of patients indicated that the disease had a serious impact on life.88.93%(1165/1310)of patients indicated that the disease had a serious impact on the family economy.49.39%(647/1310)of the patients were subsistence or poor households.Conclusion The majority of hemophiliacs in Henanprovince are severe patients with insufficient prevention and treatment,and the rate of joint disease and disability is high.It is urgent to establish a hierarchical diagnosis and treatment system for hemophilia in Henanprovince,strengthen and standardize the prevention and treatment of hemophiliacs,.

关 键 词：血友病 现状分析 河南省 

分 类 号：R544.1[医药卫生—心血管疾病]