Estimating Global Burden of Disease due to congenital anomaly: An analysis of European data

Breidge Boyle; Marie-Claude Addor; Larraitz Arriola; Ingeborg Barisic; Fabrizio Bianchi; Melinda Csaky-Szunyogh; Hermien E. K. de  Walle; Carlos Matias Dias; Elizabeth Draper; Miriam Gatt; Ester Garne; Martin Haeusler; Karin Kallen; Anna Latos-Bielenska; Bob McDonnell; Carmel Mullaney; Vera Nelen; Amanda J. Neville; Mary O'Mahony; Annette Queisser-Wahrendorf; Hanitra Randrianaivo; Judith Rankin; Anke Rissmann; Annukka Ritvanen; Catherine Rounding; David Tucker; Christine Verellen-Dumoulin; Diana Wellesley; Ben Wreyford; Natalia Zymak-Zakutnia; Helen Dolk

doi:10.1136/archdischild-2016-311845

Estimating Global Burden of Disease due to congenital anomaly: An analysis of European data

Breidge Boyle, Marie-Claude Addor, Larraitz Arriola, Ingeborg Barisic, Fabrizio Bianchi, Melinda Csaky-Szunyogh, Hermien E. K. de Walle, Carlos Matias Dias, Elizabeth Draper, Miriam Gatt, Ester Garne, Martin Haeusler, Karin Kallen, Anna Latos-Bielenska, Bob McDonnell, Carmel Mullaney, Vera Nelen, Amanda J. Neville, Mary O'Mahony, Annette Queisser-WahrendorfHanitra Randrianaivo, Judith Rankin, Anke Rissmann, Annukka Ritvanen, Catherine Rounding, David Tucker, Christine Verellen-Dumoulin, Diana Wellesley, Ben Wreyford, Natalia Zymak-Zakutnia, Helen Dolk^*

^*Corresponding author for this work

Reproductive Origins of Adult Health and Disease (ROAHD)

Research output: Contribution to journal › Article › Academic › peer-review

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Abstract

Objective To validate the estimates of Global Burden of Disease (GBD) due to congenital anomaly for Europe by comparing infant mortality data collected by EUROCAT registries with the WHO Mortality Database, and by assessing the significance of stillbirths and terminations of pregnancy for fetal anomaly (TOPFA) in the interpretation of infant mortality statistics.

Design, setting and outcome measures EUROCAT is a network of congenital anomaly registries collecting data on live births, fetal deaths from 20 weeks' gestation and TOPFA. Data from 29 registries in 19 countries were analysed for 2005-2009, and infant mortality (deaths of live births at age

Results According to WHO, 17%-42% of infant mortality was attributed to congenital anomaly. In 11 EUROCAT countries, average infant mortality with congenital anomaly was 1.1 per 1000 births, with higher rates where TOPFA is illegal (Malta 3.0, Ireland 2.1). The rate of stillbirths with congenital anomaly was 0.6 per 1000. The average TOPFA prevalence was 4.6 per 1000, nearly three times more prevalent than stillbirths and infant deaths combined. TOPFA also impacted on the prevalence of postneonatal survivors with non-lethal congenital anomaly.

Conclusions By excluding TOPFA and stillbirths from GBD years of life lost (YLL) estimates, GBD underestimates the burden of disease due to congenital anomaly, and thus declining YLL over time may obscure lack of progress in primary, secondary and tertiary prevention.

Original language	English
Pages (from-to)	F22-F28
Number of pages	7
Journal	ARCHIVES OF DISEASE IN CHILDHOOD-FETAL AND NEONATAL EDITION
Volume	103
Issue number	1
DOIs	https://doi.org/10.1136/archdischild-2016-311845
Publication status	Published - Jan-2018

Keywords

UPDATED SYSTEMATIC ANALYSIS
CHILD-MORTALITY
PRIMARY PREVENTION
NATIONAL CAUSES
DOWN-SYNDROME
POPULATION
TRENDS
EPIDEMIOLOGY
PREVALENCE
COUNTRIES

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EUROCAT Northern Netherlands
van Kammen-Bergman, J. (Creator), de Walle, H. (Creator), Bakker, M. (Creator), Lutke, R. (Creator), Muhlenberg, N. (Creator), Muhlenberg, N. (Creator), van der Woude, A. (Creator) & Doornbos, F. (Creator), University of Groningen, 1981
https://www.umcg.nl/NL/Zorg/ouders/Deelname_wetenschappelijk_onderzoek/OnderzoekNaarAangeborenAandoeningen/Paginas/default.aspx and one more link, https://www.umcg.nl/SiteCollectionDocuments/Zorg/Ouders/Eurocat/Registry_description_NNL_final_version_jan2018.pdf (show fewer)
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Boyle, B., Addor, M-C., Arriola, L., Barisic, I., Bianchi, F., Csaky-Szunyogh, M., de Walle, H. E. K., Dias, C. M., Draper, E., Gatt, M., Garne, E., Haeusler, M., Kallen, K., Latos-Bielenska, A., McDonnell, B., Mullaney, C., Nelen, V., Neville, A. J., O'Mahony, M., ... Dolk, H. (2018). Estimating Global Burden of Disease due to congenital anomaly: An analysis of European data. ARCHIVES OF DISEASE IN CHILDHOOD-FETAL AND NEONATAL EDITION, 103(1), F22-F28. https://doi.org/10.1136/archdischild-2016-311845

@article{32e63802f24f4b5b835a7a09b4056521,

title = "Estimating Global Burden of Disease due to congenital anomaly: An analysis of European data",

abstract = "Objective To validate the estimates of Global Burden of Disease (GBD) due to congenital anomaly for Europe by comparing infant mortality data collected by EUROCAT registries with the WHO Mortality Database, and by assessing the significance of stillbirths and terminations of pregnancy for fetal anomaly (TOPFA) in the interpretation of infant mortality statistics.Design, setting and outcome measures EUROCAT is a network of congenital anomaly registries collecting data on live births, fetal deaths from 20 weeks' gestation and TOPFA. Data from 29 registries in 19 countries were analysed for 2005-2009, and infant mortality (deaths of live births at ageResults According to WHO, 17%-42% of infant mortality was attributed to congenital anomaly. In 11 EUROCAT countries, average infant mortality with congenital anomaly was 1.1 per 1000 births, with higher rates where TOPFA is illegal (Malta 3.0, Ireland 2.1). The rate of stillbirths with congenital anomaly was 0.6 per 1000. The average TOPFA prevalence was 4.6 per 1000, nearly three times more prevalent than stillbirths and infant deaths combined. TOPFA also impacted on the prevalence of postneonatal survivors with non-lethal congenital anomaly.Conclusions By excluding TOPFA and stillbirths from GBD years of life lost (YLL) estimates, GBD underestimates the burden of disease due to congenital anomaly, and thus declining YLL over time may obscure lack of progress in primary, secondary and tertiary prevention.",

keywords = "UPDATED SYSTEMATIC ANALYSIS, CHILD-MORTALITY, PRIMARY PREVENTION, NATIONAL CAUSES, DOWN-SYNDROME, POPULATION, TRENDS, EPIDEMIOLOGY, PREVALENCE, COUNTRIES",

author = "Breidge Boyle and Marie-Claude Addor and Larraitz Arriola and Ingeborg Barisic and Fabrizio Bianchi and Melinda Csaky-Szunyogh and {de Walle}, {Hermien E. K.} and Dias, {Carlos Matias} and Elizabeth Draper and Miriam Gatt and Ester Garne and Martin Haeusler and Karin Kallen and Anna Latos-Bielenska and Bob McDonnell and Carmel Mullaney and Vera Nelen and Neville, {Amanda J.} and Mary O'Mahony and Annette Queisser-Wahrendorf and Hanitra Randrianaivo and Judith Rankin and Anke Rissmann and Annukka Ritvanen and Catherine Rounding and David Tucker and Christine Verellen-Dumoulin and Diana Wellesley and Ben Wreyford and Natalia Zymak-Zakutnia and Helen Dolk",

year = "2018",

month = jan,

doi = "10.1136/archdischild-2016-311845",

language = "English",

volume = "103",

pages = "F22--F28",

journal = "ARCHIVES OF DISEASE IN CHILDHOOD-FETAL AND NEONATAL EDITION",

issn = "1359-2998",

publisher = "BMJ PUBLISHING GROUP",

number = "1",

}

Boyle, B, Addor, M-C, Arriola, L, Barisic, I, Bianchi, F, Csaky-Szunyogh, M, de Walle, HEK, Dias, CM, Draper, E, Gatt, M, Garne, E, Haeusler, M, Kallen, K, Latos-Bielenska, A, McDonnell, B, Mullaney, C, Nelen, V, Neville, AJ, O'Mahony, M, Queisser-Wahrendorf, A, Randrianaivo, H, Rankin, J, Rissmann, A, Ritvanen, A, Rounding, C, Tucker, D, Verellen-Dumoulin, C, Wellesley, D, Wreyford, B, Zymak-Zakutnia, N & Dolk, H 2018, 'Estimating Global Burden of Disease due to congenital anomaly: An analysis of European data', ARCHIVES OF DISEASE IN CHILDHOOD-FETAL AND NEONATAL EDITION, vol. 103, no. 1, pp. F22-F28. https://doi.org/10.1136/archdischild-2016-311845

TY - JOUR

T1 - Estimating Global Burden of Disease due to congenital anomaly

T2 - An analysis of European data

AU - Boyle, Breidge

AU - Addor, Marie-Claude

AU - Arriola, Larraitz

AU - Barisic, Ingeborg

AU - Bianchi, Fabrizio

AU - Csaky-Szunyogh, Melinda

AU - de Walle, Hermien E. K.

AU - Dias, Carlos Matias

AU - Draper, Elizabeth

AU - Gatt, Miriam

AU - Garne, Ester

AU - Haeusler, Martin

AU - Kallen, Karin

AU - Latos-Bielenska, Anna

AU - McDonnell, Bob

AU - Mullaney, Carmel

AU - Nelen, Vera

AU - Neville, Amanda J.

AU - O'Mahony, Mary

AU - Queisser-Wahrendorf, Annette

AU - Randrianaivo, Hanitra

AU - Rankin, Judith

AU - Rissmann, Anke

AU - Ritvanen, Annukka

AU - Rounding, Catherine

AU - Tucker, David

AU - Verellen-Dumoulin, Christine

AU - Wellesley, Diana

AU - Wreyford, Ben

AU - Zymak-Zakutnia, Natalia

AU - Dolk, Helen

PY - 2018/1

Y1 - 2018/1

N2 - Objective To validate the estimates of Global Burden of Disease (GBD) due to congenital anomaly for Europe by comparing infant mortality data collected by EUROCAT registries with the WHO Mortality Database, and by assessing the significance of stillbirths and terminations of pregnancy for fetal anomaly (TOPFA) in the interpretation of infant mortality statistics.Design, setting and outcome measures EUROCAT is a network of congenital anomaly registries collecting data on live births, fetal deaths from 20 weeks' gestation and TOPFA. Data from 29 registries in 19 countries were analysed for 2005-2009, and infant mortality (deaths of live births at ageResults According to WHO, 17%-42% of infant mortality was attributed to congenital anomaly. In 11 EUROCAT countries, average infant mortality with congenital anomaly was 1.1 per 1000 births, with higher rates where TOPFA is illegal (Malta 3.0, Ireland 2.1). The rate of stillbirths with congenital anomaly was 0.6 per 1000. The average TOPFA prevalence was 4.6 per 1000, nearly three times more prevalent than stillbirths and infant deaths combined. TOPFA also impacted on the prevalence of postneonatal survivors with non-lethal congenital anomaly.Conclusions By excluding TOPFA and stillbirths from GBD years of life lost (YLL) estimates, GBD underestimates the burden of disease due to congenital anomaly, and thus declining YLL over time may obscure lack of progress in primary, secondary and tertiary prevention.

AB - Objective To validate the estimates of Global Burden of Disease (GBD) due to congenital anomaly for Europe by comparing infant mortality data collected by EUROCAT registries with the WHO Mortality Database, and by assessing the significance of stillbirths and terminations of pregnancy for fetal anomaly (TOPFA) in the interpretation of infant mortality statistics.Design, setting and outcome measures EUROCAT is a network of congenital anomaly registries collecting data on live births, fetal deaths from 20 weeks' gestation and TOPFA. Data from 29 registries in 19 countries were analysed for 2005-2009, and infant mortality (deaths of live births at ageResults According to WHO, 17%-42% of infant mortality was attributed to congenital anomaly. In 11 EUROCAT countries, average infant mortality with congenital anomaly was 1.1 per 1000 births, with higher rates where TOPFA is illegal (Malta 3.0, Ireland 2.1). The rate of stillbirths with congenital anomaly was 0.6 per 1000. The average TOPFA prevalence was 4.6 per 1000, nearly three times more prevalent than stillbirths and infant deaths combined. TOPFA also impacted on the prevalence of postneonatal survivors with non-lethal congenital anomaly.Conclusions By excluding TOPFA and stillbirths from GBD years of life lost (YLL) estimates, GBD underestimates the burden of disease due to congenital anomaly, and thus declining YLL over time may obscure lack of progress in primary, secondary and tertiary prevention.

KW - UPDATED SYSTEMATIC ANALYSIS

KW - CHILD-MORTALITY

KW - PRIMARY PREVENTION

KW - NATIONAL CAUSES

KW - DOWN-SYNDROME

KW - POPULATION

KW - TRENDS

KW - EPIDEMIOLOGY

KW - PREVALENCE

KW - COUNTRIES

U2 - 10.1136/archdischild-2016-311845

DO - 10.1136/archdischild-2016-311845

M3 - Article

SN - 1359-2998

VL - 103

SP - F22-F28

JO - ARCHIVES OF DISEASE IN CHILDHOOD-FETAL AND NEONATAL EDITION

JF - ARCHIVES OF DISEASE IN CHILDHOOD-FETAL AND NEONATAL EDITION

IS - 1

ER -

Estimating Global Burden of Disease due to congenital anomaly: An analysis of European data

Abstract

Keywords

Access to Document

Handle.net

Datasets

EUROCAT Northern Netherlands

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