Paper 2: EUROCAT public health indicators for congenital anomalies in Europe

Babak Khoshnood, Ruth Greenlees, Maria Loane, Helen Dolk, EUROCAT Project Management Committee, EUROCAT Working Group, Martin Haeusler, Vera Nelen, Christine Verellen-Dumoulin, Ingeborg Barisic, Hanitra Randrianaivo, Babak Khoshnood, Berenice Doray, Annette Queisser-Luft, Anke Rissmann, Mary O'Mahony, Bob McDonnell, Carmel Mullaney, Elisa Calzolari, Fabrizio Bianchi, Miriam Gatt, Marian Bakker, Kari Klungsoyr Melve, Anna Latos-Bielenska, Carlos Matias Dias, Joaquin Salvador, Larraitz Arriola, Marie-Claude Addor, Wladimir Wertelecki, Elizabeth Draper, Judith Rankin, Patricia Boyd, David Tucker, Diana Wellesley, Babak Khoshnood, Ruth Greenlees, Maria Loane, Helen Dolk, EUROCAT Project Management Committee, EUROCAT Working Group, Martin Haeusler, Vera Nelen, Christine Verellen-Dumoulin, Ingeborg Barisic, Hanitra Randrianaivo, Babak Khoshnood, Berenice Doray, Annette Queisser-Luft, Anke Rissmann, Mary O'Mahony, Bob McDonnell, Carmel Mullaney, Elisa Calzolari, Fabrizio Bianchi, Miriam Gatt, Marian Bakker, Kari Klungsoyr Melve, Anna Latos-Bielenska, Carlos Matias Dias, Joaquin Salvador, Larraitz Arriola, Marie-Claude Addor, Wladimir Wertelecki, Elizabeth Draper, Judith Rankin, Patricia Boyd, David Tucker, Diana Wellesley

Abstract

Objective: The purpose of this article is to present the specific public health indicators recently developed by EUROCAT that aim to summarize important aspects of the public health impact of congenital anomalies in a few quantitative measures.

Methods: The six indicators are: (1) congenital anomaly perinatal mortality, (2) congenital anomaly prenatal diagnosis prevalence, (3) congenital anomaly termination of pregnancy, (4) Down syndrome livebirth prevalence, (5) congenital anomaly pediatric surgery, and (6) neural tube defects (NTD) total prevalence. Data presented for this report pertained to all cases (livebirths, fetal deaths, or stillbirths after 20 weeks of gestation and terminations of pregnancy for fetal anomaly [TOPFA]) of congenital anomaly from 27 full member registries of EUROCAT that could provide data for at least 3 years during the period 2004 to 2008. Prevalence of anomalies, prenatal diagnosis, TOPFA, pediatric surgery, and perinatal mortality were calculated per 1000 births.

Results: The overall perinatal mortality was approximately 1.0 per 1000 births for EUROCAT registries with almost half due to fetal and the other half due to first week deaths. There were wide variations in perinatal mortality across the registries with the highest rates observed in Dublin and Malta, registries in countries where TOPFA are illegal, and in Ukraine. The overall perinatal mortality across EUROCAT registries slightly decreased between 2004 and 2008 due to a decrease in first week deaths. The prevalence of TOPFA was fairly stable at about 4 per 1000 births. There were variations in livebirth prevalence of cases typically requiring surgery across the registries; however, for most registries this prevalence was between 3 and 5 per 1000 births. Prevalence of NTD decreased by about 10% from 1.05 in 2004 to 0.94 per 1000 in 2008.

Conclusion: It is hoped that by publishing the data on EUROCAT indicators, the public health importance of congenital anomalies can be clearly summarized to policy makers, the need for accurate data from registries emphasized, the need for primary prevention and treatment services highlighted, and the impact of current services measured.

Copyright © 2011 Wiley-Liss, Inc.

Figures

Figure 1
Figure 1
Perinatal mortality (foetal deaths (FD) + 1st week deaths) per 1000 births, EUROCAT Registries, 2004 – 2008
Figure 1
Figure 1
Perinatal mortality (foetal deaths (FD) + 1st week deaths) per 1000 births, EUROCAT Registries, 2004 – 2008
Figure 2
Figure 2
Prevalence of prenatal diagnosis per 1,000 births, EUROCAT Registries, 2004 – 2008
Figure 2
Figure 2
Prevalence of prenatal diagnosis per 1,000 births, EUROCAT Registries, 2004 – 2008
Figure 3
Figure 3
Prevalence of termination of pregnancy for foetal anomaly (TOPFA) per 1,000 births, EUROCAT Registries, 2004 – 2008
Figure 3
Figure 3
Prevalence of termination of pregnancy for foetal anomaly (TOPFA) per 1,000 births, EUROCAT Registries, 2004 – 2008
Figure 4
Figure 4
Live birth prevalence of Down syndrome per 1000 births, EUROCAT Registries, 2004 – 2008
Figure 5
Figure 5
Prevalence of six malformations and/or malformation groups typically requiring surgery per 1000 births, EUROCAT Registries, 2004 – 2008
Figure 5
Figure 5
Prevalence of six malformations and/or malformation groups typically requiring surgery per 1000 births, EUROCAT Registries, 2004 – 2008
Figure 6
Figure 6
Prevalence of neural tube defects (NTD) per 1000 births, EUROCAT Registries, 2004 – 2008
Figure 6
Figure 6
Prevalence of neural tube defects (NTD) per 1000 births, EUROCAT Registries, 2004 – 2008

Source: PubMed

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