The quality and the accuracy of codes for terminations of pregnancy for fetal anomalies recorded in hospital databases in three countries in northern Europe
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The quality and the accuracy of codes for terminations of pregnancy for fetal anomalies recorded in hospital databases in three countries in northern Europe. / Garne, Ester; Urhoj, Stine Kjaer; Bakker, Marian; Gissler, Mika; Given, Joanne; Heino, Anna; Limb, Elisabeth; Loane, Maria; de Walle, Hermien; Morris, Joan.
In: Birth Defects Research, Vol. 115, No. 3, 2023, p. 405-412.Research output: Contribution to journal › Journal article › Research › peer-review
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TY - JOUR
T1 - The quality and the accuracy of codes for terminations of pregnancy for fetal anomalies recorded in hospital databases in three countries in northern Europe
AU - Garne, Ester
AU - Urhoj, Stine Kjaer
AU - Bakker, Marian
AU - Gissler, Mika
AU - Given, Joanne
AU - Heino, Anna
AU - Limb, Elisabeth
AU - Loane, Maria
AU - de Walle, Hermien
AU - Morris, Joan
N1 - © 2022 The Authors. Birth Defects Research published by Wiley Periodicals LLC.
PY - 2023
Y1 - 2023
N2 - 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.
AB - 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.
U2 - 10.1002/bdr2.2133
DO - 10.1002/bdr2.2133
M3 - Journal article
C2 - 36573578
VL - 115
SP - 405
EP - 412
JO - Birth Defects Research
JF - Birth Defects Research
SN - 2472-1727
IS - 3
ER -
ID: 331248123