Garne Ester, Olsen Morten Smaerup, Johnsen Søren Paaske, Hjortdal Vibeke, Andersen Henrik Ørbaek, Nissen Henrik, Søndergaard Lars, Videbaek Jørgen
Paediatric Department, Hospital Lillebaelt, Kolding,
Congenit Heart Dis. 2012 Jan-Feb;7(1):46-9. doi: 10.1111/j.1747-0803.2011.00581.x. Epub 2011 Oct 20.
Estimates of the prevalence of congenital heart defects (CHD) have been published over many years and from many regions. As they are based on different definitions of which cases to include in the CHD prevalence, published prevalence estimates vary substantially. With the increasing use of echocardiography in neonatal intensive care, a patent ductus arteriosus (PDA) or flow over the atrial septum will often be visible. These findings may be coded as CHD at discharge and in this way falsely increase the CHD prevalence in the population. There are several purposes for which population-based data on CHD may be used: etiology, planning of treatment, or obtain information on outcome, including mortality. For etiology studies, it is important to include terminations of pregnancy as well as all births with CHD. For mortality studies in live births, inclusion of preterm born infants with PDA will increase overall mortality of CHD. The Danish Register of Congenital Heart Disease is based on hospital discharge diagnoses and diagnoses from outpatient visits. To increase the validity of these data, extensive data cleaning has been carried out based on record review and knowledge on the discharge coding practice. We include PDA and atrial septal defects as CHD cases if these defects are still open 2 months after birth. International consensus on how to define CHD would improve the validity and comparability of epidemiological studies on CHD.
多年来，许多地区都公布了先天性心脏病（CHD）患病率的估计数据。由于这些数据所依据的先天性心脏病病例纳入定义不同，已公布的患病率估计值差异很大。随着超声心动图在新生儿重症监护中的使用日益增加，动脉导管未闭（PDA）或房间隔血流情况常常可见。这些发现可能在出院时被编码为先天性心脏病，从而错误地提高了人群中先天性心脏病的患病率。基于人群的先天性心脏病数据可用于多个目的：病因学研究、治疗规划或获取包括死亡率在内的预后信息。对于病因学研究，纳入妊娠终止病例以及所有患有先天性心脏病的出生病例很重要。对于活产儿的死亡率研究，纳入患有动脉导管未闭的早产婴儿会增加先天性心脏病的总体死亡率。丹麦先天性心脏病登记册基于医院出院诊断和门诊就诊诊断。为提高这些数据的有效性，已根据记录审查和出院编码实践知识进行了广泛的数据清理。如果这些缺陷在出生后2个月仍未闭合，我们将动脉导管未闭和房间隔缺损纳入先天性心脏病病例。关于如何定义先天性心脏病的国际共识将提高先天性心脏病流行病学研究的有效性和可比性。
