先天性多发性关节挛缩症康复专家共识  

Expert consensus on rehabilitation of arthrogryposis multiplex congenita

作　　者：俞沁圆 王斌[2] 沈卫民[3] 魏在荣 沈小芳 刘波[6] 田晓菲[7] 张红星 谭为 邵锋[10] 郭雪松[11] 戴四海 田景顺 胡勇[14] 廖维 徐涛涛 仲荣洲[17] 陈斌[17] 张桐 王敏娟 YU Qinyuan;WANG Bin;SHEN Weimin;WEI Zairong;SHEN Xiaofang;LIU Bo;TIAN Xiaofei;ZHANG Hongxing;TAN Wei;SHAO Feng;GUO Xuesong;DAI Sihai;TIAN Jingshun;HU Yong;LIAO Wei;XU Taotao;ZHONG Rongzhou;CHEN Bin;ZHANG Tong;WANG Minjuan(Department of Rehabilitation Engineering,Yangzhi Rehabilitation Hospital,Tongji University,Shanghai 201619,China;Department of Plastic and Reconstructive Surgery,Shanghai Ninth People's Hospital,Shanghai Jiao Tong University School of Medicine,Shanghai 200011,China;Department of Burn and Plastic Surgery,Children's Hospital of Nanjing Medical University,Nanjing 210008,China;Department of Plastic and Burn Surgery,Affiliated Hospital of Zunyi Medical University,Zunyi 563099,China;Department of Hand Surgery,Children's Hospital of Soochow University,Suzhou 215002,China;Department of Hand Surgery,Beijing Jishuitan Hospital,Beijing 100035,China;Department of Hand and Foot Surgery,Children's Hospital of Chongqing Medical University,Chongqing 400015,China;Department of Hand Surgery,Xi'an Honghui Hospital,Xi'an 710054,China;Department of Pediatric Orthopedics,Southern Medical University Third Hospital,Guangzhou 510630,China;Department of Orthopedics,The Third Affiliated Hospital of Xinxiang Medical University,Xinxiang 453003,China;Department of Plastic Surgery,Children's Hospital of Shanxi,Taiyuan 030006,China;Department of Pediatric Surgery,Maternity and Child Health Care of Zaozhuang,Zaozhuang 277102,China;Department of Hand and Foot Microsurgery,Xinjiang Children's Hospital,Urumqi 830091,China;Department of Hand Surgery/Foot and Ankle Surgery,The Second Hospital of Shandong University,Jinan 250033,China;Department of Orthopedics,Children's Hospital of Nanjing Medical University,Nanjing 210008,China;Department of Orthopedics,Kunming Children's Hospital,Kunming 650103,China;Department of Orthopedic and Joint Rehabilitation,Yangzhi Rehabilitation Hospital,Tongji University,Shanghai 201619,China;Department of Health,Shanghai Normal University Tianhua College,Shanghai 201815,China;Department of Psychotherap

机构地区：[1]同济大学附属养志康复医院康复工程科,上海市201619 [2]上海交通大学医学院附属第九人民医院整复外科,上海市200011 [3]南京医科大学附属儿童医院烧伤整形外科,江苏省南京市210008 [4]遵义医科大学附属医院整形烧伤外科,贵州省遵义市563099 [5]苏州大学附属儿童医院手外科,江苏省苏州市215002 [6]北京积水潭医院手外科,北京市100035 [7]重庆医科大学附属儿童医院手足外科,重庆市400015 [8]西安市红会医院手外科,陕西省西安市710054 [9]南方医科大学第三附属医院儿童骨科,广东省广州市510630 [10]新乡医学院第三附属医院骨科,河南省新乡市453003 [11]山西省儿童医院整形外科,山西省太原市030006 [12]枣庄市妇幼保健院小儿外科,山东省枣庄市277102 [13]乌鲁木齐市新疆儿童医院手足显微外科,新疆维吾尔自治区830091 [14]山东大学第二医院手外科/足踝外科,山东省济南市250033 [15]南京医科大学附属儿童医院骨科,江苏省南京市210008 [16]昆明市儿童医院骨外科,云南省昆明市650103 [17]同济大学附属养志康复医院骨与关节康复科,上海市201619 [18]上海师范大学天华学院健康学院,上海市201815 [19]同济大学附属养志康复医院心理治疗科,上海市201619

出　　处：《组织工程与重建外科》2024年第2期160-175,共16页Journal of Tissue Engineering and Reconstructive Surgery

基　　金：国家重点研发计划(2022YFC2703700、2022YFC2703704);中国残联课题残疾人辅助器具专项(2021CDPFAT-40);中国康复医学会科技发展项目(KFKT-2023-038)。

摘　　要：先天性多发性关节挛缩症(Arthrogryposis multiplex congenita,AMC)是累及身体多个部位挛缩和畸形的疾病,致残率高,严重影响患者的日常生活。本共识以循证医学证据为依据,经全国肢体畸形专家组反复研讨,结合近年来国内外研究成果,基于渐进式精准康复理念,为AMC患者制定个性化康复策略,规范康复流程,制定全周期康复管理标准,有效提高患者康复疗效。本共识主要包括康复目标、康复团队组成与职责、康复治疗方法、康复工程技术以及定期随访,可供临床医师、康复医师、康复治疗师、康复工程师、护师等在工作中参考及应用。Arthrogryposis multiplex congenita is a disease that affects multiple parts of the body,causing contracture and deformity.It has a high disability rate and severely affects the daily life of patients.This consensus is based on evidencebased medicine and has been repeatedly discussed by a national expert group on limb deformities.In combination with recent domestic and foreign research results,personalized rehabilitation strategies have been developed for AMC patients based on the progressive precision rehabilitation concept,standardizing the rehabilitation process and formulating comprehensive rehabilitation management standards,effectively improving the rehabilitation effectiveness of patients.This consensus mainly includes rehabilitation goals,composition and responsibilities of the rehabilitation team,rehabilitation treatment methods,rehabilitation engineering technology,and regular follow-up,which can be used as a reference and application for clinical physicians,rehabilitation physicians,rehabilitation therapists,rehabilitation engineers,nurse practitioners,etc.for reference and application in their work.

关 键 词：先天性多发性关节挛缩症 渐进式精准康复 全周期康复管理 康复专家共识 

分 类 号：R496[医药卫生—康复医学]