The quality and the accuracy of codes for terminations of pregnancy for fetal anomalies recorded in hospital databases in three countries in northern Europe

Background: The number of terminations of pregnancy for fetal anomalies in Europe (TOPFA) has increased over recent decades. Therefore, it is important that TOPFAs, in addition to all other birth outcomes, are included in the surveillance of congenital anomalies and in studies on possible teratogenic risks of pregnancy exposures. The aim of this study was to evaluate the quality and the accuracy of codes identifying TOPFA cases in hospital databases. Methods: TOPFA cases recorded in three EUROCAT congenital anomaly registries (Finland, 2010-2014; Funen in Denmark, 2005-2014; and northern Netherlands, 2013-2014) were linked to hospital databases using maternal IDs. Results: A total of 2,114 TOPFA cases over the study period were identified in the registries and 2,096 (99%) of these pregnancies were identified in the hospital databases. An end of pregnancy code was present for 91% of the cases and a code for a congenital anomaly was present for 82% (with some differences across registries). The proportion of TOPFA cases with a code for a specific congenital anomaly was < 50% for cases with a structural anomaly (range 0%-50%) and 70% for cases with a chromosomal anomaly. Conclusion: Hospital databases have limited information or codes to identify TOPFAs for specific anomalies and the data are not detailed enough for surveillance of congenital anomalies or for studies analyzing pregnancy exposures and risk of congenital anomalies. However, hospital data may be used to identify the occurrence of a TOPFA to enable more detailed information to be obtained from the medical records.

Automated summary

This study evaluated the quality and accuracy of codes identifying termination of pregnancy for fetal anomalies (TOPFA) cases in hospital databases. The results showed that hospital databases have limited information or codes to accurately identify specific anomalies in TOPFA cases, but can be used to identify the occurrence of a TOPFA and obtain more detailed information from medical records.