建立先天性心脏病国家数据库:STS和ECHSA的经验  

Evolving a national congenital heart database in China: the urgent need and lessons from the STS and ECHSA experience

作　　者：任琳 陈欣欣 罗毅[3] 李稼[1] Ren Lin;Chen Xinxin;Luo Yi;Li Jia(Clinical Physiology Research Laboratory, Capital Institute of Pediatrics, Beijing 100020,China;Department of Cardiac Surgery, Guangzhou Women and Children's Medical Center, Guangzhou 510430,China;Department of Cardiac Surgery, Children's Hospital affiliated to Capital Institute of Pediatrics, Beijing 100020,China)

机构地区：[1]首都儿科研究所临床病理生理研究室,北京100020 [2]广州妇女儿童医疗中心心血管外科,510430 [3]首都儿科研究所附属儿童医院心血管外科,北京100020

出　　处：《中华胸心血管外科杂志》2019年第5期317-320,共4页Chinese Journal of Thoracic and Cardiovascular Surgery

摘　　要：近几十年以来,我国先天性心脏病外科飞跃发展,年手术量达到世界之最。然而,由于尚无先心病数据库,限制了各中心间疗效比较,严重阻碍了先心病诊疗质量的提高。这一点已由欧洲先天性心脏病外科协会(ECHSA)和美国胸外科医师学会(STS)数据库发展经验证实。本文描述了ECHSA和STS数据库的发展历程,因STS数据库发展更为完善,着重介绍了STS数据库的8个关键机制:基本模块、通用语、数据库注册、复杂性分层和术后结局、验证数据有效性和准确性、亚学科之间的合作、纵向随访和数据链接以及医疗质量评定,这些机制全面精准地评估各个中心的手术数量和质量。指出在中国建立国家先心病数据库的迫切性和主要障碍。目前我国仍只用手术数量而非质量,作为评价中心的标准,这与国际目前发展水平相差甚远。本文旨在为国家先心病数据库的建立提供参考。There has been fast progress in congenital heart surgery in China in the past decades, and the annual number of cardiac operations is definitely the largest in the world. However, the lack of a national database in congenital heart surgery has limited the effective comparisons of clinical management and outcomes among centers. This clearly impedes the improvement in quality of care for children with congenital heart disease, as learned from the experiences in the development of the two most important congenital heart databases, i. e., the European Congenital Heart Surgeons Association(ECHSA) database and the Society of Thoracic Surgeons(STS) database in the US. Therefore, this article, firstly, described the brief history of ECHSA and STS databases in the past 2 decades. Secondly, the 8 mechanisms that have been developed in the STS database were introduced, consisting of basic information, nomenclature, database-registry, mechanism of evaluating case complexity together with surgical outcomes, mechanism to verify data validity and accuracy, collaboration between subspecialties, longitudinal follow-up and linked databases and quality improvement. These mechanisms have helped to effectively evaluate and compare the surgical outcomes in terms of quantity and quality among centers. The national database has played a crucial role in improving the quality of care for children with congenital heart disease. Thirdly, the urgent need and the main obstacles of developing a national database in congenital heart surgery in China were pointed out, as currently the cardiac centers are still evaluated based on the quantity of operations, but not quality. This article aimed to provide a reference for the establishment of a national congenital heart database in China.

关 键 词：先天性心脏病 数据库 STS 质量评定 外科医师 先心病 手术量 复杂性 

分 类 号：R541.1[医药卫生—心血管疾病]