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Ethnic and socioeconomic variation in incidence of congenital heart defects
  1. Rachel L Knowles1,
  2. Deborah Ridout1,
  3. Sonya Crowe2,
  4. Catherine Bull3,
  5. Jo Wray3,
  6. Jenifer Tregay3,
  7. Rodney C Franklin4,
  8. David J Barron5,
  9. David Cunningham6,
  10. Roger C Parslow7,
  11. Katherine L Brown3
  1. 1Population Policy and Practice Programme, UCL Great Ormond St Institute of Child Health, University College London, London, UK
  2. 2Clinical Operational Research Unit, University College London, London, UK
  3. 3Cardiac Unit, Great Ormond Street Hospital NHS Foundation Trust, London, UK
  4. 4Paediatric Cardiology Department, Royal Brompton and Harefield NHS Foundation Trust, London, UK
  5. 5Birmingham Children's Hospital NHS Foundation Trust, Birmingham, UK
  6. 6National Institute for Cardiovascular Outcomes (NICOR), London, UK
  7. 7Paediatric Intensive Care Audit Network (PICANet), Leeds, UK
  1. Correspondence to Dr Rachel L Knowles, Life Course Epidemiology and Statistics, Population Policy and Practice Programme, UCL Great Ormond St Institute of Child Health, 30 Guilford Street, London WC1N 1EH, UK; rachel.knowles{at}


Introduction Ethnic differences in the birth prevalence of congenital heart defects (CHDs) have been reported; however, studies of the contemporary UK population are lacking. We investigated ethnic variations in incidence of serious CHDs requiring cardiac intervention before 1 year of age.

Methods All infants who had a cardiac intervention in England and Wales between 1 January 2005 and 31 December 2010 were identified in the national congenital heart disease surgical audit and matched with paediatric intensive care admission records to create linked individual child records. Agreement in reporting of ethnic group by each audit was evaluated. For infants born 1 January 2006 to 31 December 2009, we calculated incidence rate ratios (IRRs) for CHDs by ethnicity and investigated age at intervention, antenatal diagnosis and area deprivation.

Results We identified 5350 infants (2940 (55.0%) boys). Overall CHD incidence was significantly higher in Asian and Black ethnic groups compared with the White reference population (incidence rate ratios (IRR) (95% CIs): Asian 1.5 (1.4 to 1.7); Black 1.4 (1.3 to 1.6)); incidence of specific CHDs varied by ethnicity. No significant differences in age at intervention or antenatal diagnosis rates were identified but affected children from non-White ethnic groups were more likely to be living in deprived areas than White children.

Conclusions Significant ethnic variations exist in the incidence of CHDs, including for specific defects with high infant mortality. It is essential that healthcare provision mitigates ethnic disparity, including through timely identification of CHDs at screening, supporting parental choice and effective interventions. Future research should explore the factors underlying ethnic variation and impact on longer-term outcomes.

  • congenital heart disease
  • Epidemiology
  • ethnicity
  • socio-economic deprivation
  • record linkage

This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See:

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  • Contributors RLK conceived the analysis and drafted the paper. RLK, DR and KLB designed the study, and RLK and DR performed the statistical analysis. DC and RCP undertook the linkage of NICOR and PICANET data. RLK, DR, KLB, SC, CB, JW, JT, RCF, DJB, DC and RCP contributed to the interpretation of the data. All authors revised the work critically for important intellectual content. RLK is guarantor of the paper and takes responsibility for the integrity of the work as a whole, from inception to published article.

  • Funding This project was funded by the National Institute for Health Research Health Services and Delivery Research programme (project no: 10/2002/29). Further information about the Infant Heart Study can be found on the following NIHR website: Additional support was provided by the Health Foundation, an independent charity working to continuously improve the quality of healthcare in the UK. NCHDA and PICANet are funded by the National Clinical Audit and Patient Outcomes Programme, administered by the Healthcare Quality Improvement Partnership (HQIP). PICANet is also funded by Welsh Health Specialised Services Committee; NHS Lothian/National Service Division NHS Scotland; the Royal Belfast Hospital for Sick Children; National Office of Clinical Audit Ireland (NOCA) and HCA International.

  • Disclaimer The views and opinions expressed herein are those of the authors and do not necessarily reflect those of the NIHR HS&DR programme or the Department of Health.

  • Competing interests None declared.

  • Ethics approval Approval was obtained from London-Central Research Ethics Committee (reference number 12/LO/1398) and the Health Research Authority (HRA) Confidentiality Advisory Group (reference number ECC 6-02 (FT5)/2012).

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data sharing statement The linked data set was obtained from the NCHDA and PICANET with support under Section 251 (Health and Care Act) approved by the Health Research Authority Confidentiality Advisory Group (ref: ECC 6-02(FT5)/2012). This support does not permit sharing of the study data set with third parties.

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