Article Text
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 <1 year) compared with the WHO Mortality Database. Eight EUROCAT countries were excluded from further analysis on the basis that this comparison showed poor ascertainment of survival status.
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.
- Congenital anomaly
- mortality
- Global Burden of Disease
- YLL
- DALY
This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/
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Footnotes
Contributors HD and BB defined the research question, designed the study and interpreted the analysis. BB and HD co-wrote the paper. BB prepared and analysed the data. M-CA, LA, IB, FB, MC-S, HEKdW, CMD, ED, MG, EG, MH, KK, AL-B, BM, CM, VN, AJN, MO, AQ-W, HR, JR, AnkR, AnnR, CR, DT, CV-D, DW, BW and NZ-Z provided data and commented on drafts.
Funding Executive Agency for Health and Consumers Grant Agreement: 2013 3307 UU (OG).
Competing interests None declared.
Ethics approval Ethical approval has been granted for the collection of these data.
Provenance and peer review Not commissioned; externally peer reviewed.
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