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 Walle; Diana Wellesley; JK Morris

doi:10.1371/journal.pone.0290711

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

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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 language	English
Article number	e0290711
Pages (from-to)	1-16
Number of pages	17
Journal	PLoS ONE
Volume	18
Issue number	8
Early online date	30 Aug 2023
DOIs	https://doi.org/10.1371/journal.pone.0290711
Publication status	Published 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.

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

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Linking to health care databases across Europe and the UK: results and recommendations from the EUROlinkCAT project
Loane, M. (Speaker)
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Higher risk of cerebral palsy, seizures/epilepsy, visual- and hearing impairments, cancer, injury and child abuse in children with congenital anomalies – data from the EUROlinkCAT study
Kjær Urhøj, S., Morris, J., Loane, M., Ballardini, E., Barrachina-Bonet, L., Cavero‑Carbonell, C., Coi, A., Gissler, M., Given, J., Heino, A., Jordan, S., Neville, A., Santoro, M., Tan, J., Tucker, D., Wellesley, D., Ester, G. & Damkjær, M., 10 Apr 2024, In: Acta Paediatrica. 113, 5, p. 1024-1031 8 p.
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Cite this

Loane, M., Given, J., Tan, J., Barišić, I., Barrachina-Bonet, L., Cavero-Carbonell, C., Coi, A., Densem, J., Garne, E., Gissler, M., Heino, A., Jordan, S., Lutke, L. R., Neville, A. J., Odak, L., Puccini, A., Santoro, M., Scanlon, I., Urhoj, S. K., ... Morris, JK. (2023). 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. PLoS ONE, 18(8), 1-16. Article e0290711. Advance online publication. https://doi.org/10.1371/journal.pone.0290711

@article{21f0f0dc0c88414d87f5fc4a1b1b6fab,

title = "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",

abstract = "BackgroundLinking 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. ObjectiveTo 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.MethodsEleven 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. ResultsData 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).ConclusionsThe 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 ",

author = "Maria Loane and Joanne Given and Joachim Tan and Ingeborg Bari{\v s}i{\'c} and Laia Barrachina-Bonet and Clara Cavero-Carbonell and Alessio Coi and J Densem and E Garne and Mika Gissler and Anna Heino and Sue Jordan and Lutke, {L. Ren{\'e}e} and Neville, {Amanda J.} and Ljubica Odak and A Puccini and Michele Santoro and Ieuan Scanlon and Urhoj, {Stine Kjaer} and {de Walle}, {Hermien E.K.} and Diana Wellesley and JK Morris",

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{\textquoteright}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: {\textcopyright} 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.",

year = "2023",

month = aug,

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Loane, M , Given, J, Tan, J, Barišić, I, Barrachina-Bonet, L, Cavero-Carbonell, C, Coi, A, Densem, J, Garne, E, Gissler, M, Heino, A, Jordan, S, Lutke, LR, Neville, AJ, Odak, L, Puccini, A, Santoro, M, Scanlon, I, Urhoj, SK, de Walle, HEK, Wellesley, D & Morris, JK 2023, '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', PLoS ONE, vol. 18, no. 8, e0290711, pp. 1-16. https://doi.org/10.1371/journal.pone.0290711

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. / Loane, Maria ; Given, Joanne; Tan, Joachim et al.
In: PLoS ONE, Vol. 18, No. 8, e0290711, 30.08.2023, p. 1-16.

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

TY - JOUR

T1 - 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

AU - Loane, Maria

AU - Given, Joanne

AU - Tan, Joachim

AU - Barišić, Ingeborg

AU - Barrachina-Bonet, Laia

AU - Cavero-Carbonell, Clara

AU - Coi, Alessio

AU - Densem, J

AU - Garne, E

AU - Gissler, Mika

AU - Heino, Anna

AU - Jordan, Sue

AU - Lutke, L. Renée

AU - Neville, Amanda J.

AU - Odak, Ljubica

AU - Puccini, A

AU - Santoro, Michele

AU - Scanlon, Ieuan

AU - Urhoj, Stine Kjaer

AU - de Walle, Hermien E.K.

AU - Wellesley, Diana

AU - Morris, JK

N1 - 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.

PY - 2023/8/30

Y1 - 2023/8/30

N2 - BackgroundLinking 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. ObjectiveTo 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.MethodsEleven 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. ResultsData 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).ConclusionsThe 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

AB - BackgroundLinking 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. ObjectiveTo 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.MethodsEleven 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. ResultsData 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).ConclusionsThe 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

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Loane M , Given J, Tan J, Barišić I, Barrachina-Bonet L, Cavero-Carbonell C et al. 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. PLoS ONE. 2023 Aug 30;18(8):1-16. e0290711. Epub 2023 Aug 30. doi: 10.1371/journal.pone.0290711

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

Abstract

Bibliographical note

UN SDGs

Access to Document

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Activities

Linking to health care databases across Europe and the UK: results and recommendations from the EUROlinkCAT project

Research output

Higher risk of cerebral palsy, seizures/epilepsy, visual- and hearing impairments, cancer, injury and child abuse in children with congenital anomalies – data from the EUROlinkCAT study

Cite this