中国内地地区17家三甲综合医院血友病性骨关节病外科治疗现状调查  

A Survey of the Current Status of Surgical Treatment of Hemophilic Osteoarthropathy in China Mainland 17 Grade A General Hospitals

作　　者：徐溢明 彭慧明 吕帅洁[2] 童培建[2] 李虎[3] 陈奋勇[4] 王海彬[5] 杨琪[6] 陈滨[7] 袁振[8] 毕荣修[9] 冯建民[10] 姜文学 周宗科[14] 范猛[15] 李想[16] 雷光华[17] 翁习生 XU Yiming;PENG Huiming;LYU Shuaijie;TONG Peijian;LI Hu;CHEN Fenyong;WANG Haibin;YANG Qi;CHEN Bin;YUAN Zhen;BI Rongxiu;FENG Jianmin;JIANG Wenxue;ZHOU Zongke;FAN Meng;LI Xiang;LEI Guanghua;WENG Xisheng(Department of Orthopaedic Surgery,Beijing Key Laboratory for Genetic Research of Skeletal Deformity,Key Laboratory of Big Data for Spinal Deformities,State Key Laboratory of Complex Severe and Rare Diseases,Peking Union Medical College Hospital,Chinese Academy of Medical Sciences&Peking Union Medical College,Beijing 100730,China;Department of Orthopedics,The First Affiliated Hospital of Zhejiang Chinese Medical University,Hangzhou 310006,China;Department of Orthopedics,Peking University People′s Hospital,Beijing 100044,China;Department of Orthopedics,Fujian Medical University Union Hospital,Fuzhou 350001,China;Department of Orthopedics,Guangzhou University of Chinese Medicine First Hospital,Guangzhou 510405,China;Department of Orthopedics,Harbin First Hospital,Harbin 150010,China;Department of Orthopedics,Nanfang Hospital,Southern Medical University,Guangzhou 510515,China;Department of Orthopedics,the First Affiliated Hospital of Shandong First Medical University(Shandong Provincial Qianfoshan Hospital),Jinan 250014,China;Department of Orthopedics,Affiliated Hospital of Shandong University of Traditional Chinese Medicine,Jinan 250011,China;Department of Orthopedics,Ruijin Hospital,Shanghai Jiao Tong University School of Medicine,Shanghai 200025,China;Department of Orthopedics,Shenzhen Hyzen Hospital,Shenzhen 518000,China;Department of Orthopedics,Shenzhen Ren′an Hospital,Shenzhen 518116,China;Department of Orthopedics,the Third People′s Hospital of Shenzhen,Shenzhen 518112,China;Department of Orthopedics,West China Hospital,Sichuan University,Chengdu 610041,China;Department of Orthopedics,Tianjin First Central Hospital,Tianjin 300384,China;Department of Orthopedics,PLA General Hospital,Beijing 100853,China;Department of Orthopedics,Xiangya Hospital Central South University,Changsha 410008,China)

机构地区：[1]中国医学科学院北京协和医院骨科,骨骼畸形遗传学研究北京市重点实验室,中国医学科学院脊柱畸形大数据研究与应用重点实验室,疑难重症及罕见病全国重点实验室,北京100730 [2]浙江中医药大学附属第一医院骨科,杭州310006 [3]北京大学人民医院骨科,北京100044 [4]福建医科大学附属协和医院骨科,福州350001 [5]广州中医药大学第一附属医院骨科,广州510405 [6]哈尔滨市第一医院骨科,哈尔滨150010 [7]南方医科大学南方医院骨科,广州510515 [8]山东第一医科大学第一附属医院(山东省千佛山医院)骨科,济南250014 [9]山东中医药大学附属医院骨科,济南250011 [10]上海交通大学医学院附属瑞金医院骨科,上海200025 [11]深圳禾正医院骨科,深圳518000 [12]深圳仁安医院骨科,深圳518116 [13]深圳市第三人民医院骨科,深圳518112 [14]四川大学华西医院骨科,成都610041 [15]天津市第一中心医院骨科,天津300384 [16]解放军总医院骨科医学部,北京100853 [17]中南大学湘雅医院骨科,长沙410008

出　　处：《罕见病研究》2023年第4期516-522,共7页Journal of Rare Diseases

摘　　要：目的了解中国血友病性骨关节病外科治疗的现状。方法采用方便抽样调查、在线问卷形式,选取参加《中国血友病骨科手术围术期管理指南》、中国血友病协作组、全国关节外科学组成员单位及中华医学会骨科分会成员医院,对各参与调查单位自开始进行血友病性骨关节病以来的手术情况进行调查分析。结果共纳入国内17家医院,均为综合性医院。2000年前开展血友病性骨关节病手术的医院占35.29%。各医院共报告3057例血友病性骨关节病外科手术。开展最多的术式为膝、髋关节置换术。选用最多的凝血因子替代方案为重组凝血因子制剂。有10家医院报告发现患者合并有输血相关传染病。出血和血肿形成是被报告最多的手术并发症。住院康复时间过长和经济花费过高是被报告最多的问题。结论相比患者基数,17家医院中血友病性骨关节病的外科手术普及情况和开展数量仍相对不足,需要从规范因子替代、加强康复等方面进一步加强治疗体系规范化建设,改善手术治疗效果。Objective To understand the current status of surgical treatment for hemophilia osteoarthropathy(HO)in China.Methods Using an online questionnaire,select domestic hospitals that partici-pated in the com-pilation of the‘Guideline for perioperative management of hemophilia patients undergoing orthopaedic surgery in China’,in addition to members of the National Joint Surgery Group,and the Orthopedic Branch of the Chinese Medical Association for targeted investigation and analysis.Results A total of 17 domestic hospitals were included,all of which were general hospitals.Hospitals that started HO surgery treatment before 2000 accounted for 35.29%.A total of 3057 surgical cases of HO were reported by those hospitals.The most commonly performed surgical proce-dures were hip and knee joint replacement.The most commonly used coagulation factor replacement regimen was recombinant coagulation factor preparation.Ten hospitals reported finding patients with transfusion-related infec-tious diseases.Bleeding and hematoma formation were the most frequently reported surgical complications.Ex-cessive length of hospital stay and high economic costs were the most frequently reported problems.Conclusions Surgical treatment for HO in 17 hospitals is mainly carried out in some large comprehensive medical centers in the eastern region.Compared with the patient base,the popularity and number of surgeries are still relatively insufficient.It is necessary to further standardize the treatment system by standardizing factor replacement and strengthening rehabilitation to improve surgical treatment outcomes.

关 键 词：血友病 血友病性骨关节病 手术 问卷调查 

分 类 号：R684.3[医药卫生—骨科学]