Creating a population-based cohort of children born with and without congenital anomalies using birth data matched to hospital discharge databases in 11 European regions: Assessment of linkage success and data quality

Maria Loane, Joanne Given, Joachim Tan, Ingeborg Barišić, Laia Barrachina-Bonet, Clara Cavero-Carbonell, Alessio Coi, J Densem, E Garne, Mika Gissler, Anna Heino, Sue Jordan, L. Renée Lutke, Amanda J. Neville, Ljubica Odak, A Puccini, Michele Santoro, Ieuan Scanlon, Stine Kjaer Urhoj, Hermien E.K. de WalleDiana Wellesley, JK Morris

Research output: Contribution to journalArticlepeer-review

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Abstract

Background
Linking routinely collected healthcare administrative data is a valuable method for conducting research on morbidity outcomes, but linkage quality and accuracy needs to be assessed for bias as the data were not collected for research.

Objective
To assess the accuracy of linking data on children with and without congenital anomalies to regional or national hospital discharge databases and to evaluate the quality of the matched data.

Methods
Eleven population-based EUROCAT registries participated in a EUROlinkCAT study linking data on children with a congenital anomaly and children without congenital anomalies (reference children) born between 1995 and 2014 to administrative databases including hospital discharge records. Odds ratios (OR), adjusted by region, were estimated to assess the association of maternal and child characteristics on the likelihood of being matched.

Results
Data on 102,654 children with congenital anomalies were extracted from the EUROCAT registries and 2,199,379 reference children from birth registers in the 11 regions. Overall, 97% of children with congenital anomalies and 95% of reference children were successfully matched to administrative databases. Information on maternal age, multiple birth status, sex, gestational age and birthweight were >95% complete in the linked datasets for most regions. Compared with children born at term, those born at ≤27 weeks and 28-31 weeks were less likely to be matched (adjusted OR 0.23, 95% CI 0.21-0.25 and adjusted OR 0.75, 95% CI 0.70-0.81 respectively). For children born 32-36 weeks, those with congenital anomalies were less likely to be matched (adjusted OR 0.78, 95% CI 0.71-0.85) while reference children were more likely to be matched (adjusted OR 1.28, 95% CI 1.24-1.32). Children born to teenage mothers and mothers ≥35 years were less likely to be matched compared with mothers aged 20-34 years (adjusted ORs 0.92, 95% CI 0.88-0.96; and 0.87, 95% CI 0.86-0.89 respectively).

Conclusions
The accuracy of linkage and the quality of the matched data suggest that these data are suitable for researching morbidity outcomes in most regions/countries. However, children born preterm and those born to mothers aged
Original languageEnglish
Article numbere0290711
Pages (from-to)1-16
Number of pages17
JournalPLoS ONE
Volume18
Issue number8
Early online date30 Aug 2023
DOIs
Publication statusPublished online - 30 Aug 2023

Bibliographical note

Funding Information:
All authors (ML, JEG, JT, IB, LBB, CCC, AC, JD, EG, MG, AH, SJ, LRL, AJN, LO, AP, MS, IS, SKU, HEKdeW, DW, and JKM) were funded by the European Union’s Horizon 2020 Research and Innovation programme. Grant agreement number 733001. https://research-and-innovation.ec. europa.eu/funding/funding-opportunities/fundingprogrammes- and-open-calls/horizon-2020_en The funders had no role in the study design, data collection and analysis, decision to publish, or preparation of the manuscript. We thank Gianni Astolfi, Emilia Romagna Registry of Birth Defects, University of Ferrara, for testing the standardisation scripts, and for linking and standardising the data from the Emilia Romagna registry. We also thank Anna Pierini from Tuscany and David. Tucker from Wales for providing EUROCAT congenital anomaly data for the study.

Publisher Copyright:
© 2023 Loane et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

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