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Ethnic-specific mortality of infants undergoing congenital heart surgery in England and Wales
  1. Rachel L Knowles1,
  2. Deborah Ridout2,
  3. Sonya Crowe3,
  4. Catherine Bull4,
  5. Jo Wray5,
  6. Jenifer Tregay6,
  7. Rodney C G Franklin7,
  8. David J Barron8,
  9. Roger C Parslow9,
  10. Katherine Brown10
  1. 1 Life Course Epidemiology & Biostatistics, UCL Great Ormond Street Institute of Child Health, London, UK
  2. 2 Population Policy and Practice Programme, UCL Great Ormond Street Institute of Child Health, London, UK
  3. 3 Clinical Operational Research Unit, University College London, London, UK
  4. 4 Department of Cardiology, Great Ormond Street Hospital for Children NHS Foundation Trust, London, UK
  5. 5 Centre for Outcomes and Experience Research in Children’s Health Illness and Disability, Great Ormond Street Hospital for Children NHS Foundation Trust, London, UK
  6. 6 Department of Clinical Psychology, John Radcliffe Hospital, Oxford, Oxfordshire, UK
  7. 7 Department of Paediatric Cardiology, Royal Brompton and Harefield NHS Trust, London, UK
  8. 8 Department of Paediatric Cardiac Surgery, Birmingham Children’s Hospital NHS Foundation Trust, Birmingham, UK
  9. 9 Paediatric Epidemiology Group, University of Leeds, Leeds, UK
  10. 10 Cardiac Intensive Care Unit, Great Ormond Street Hospital for Children NHS Foundation Trust, London, UK
  1. Correspondence to Dr Rachel L Knowles, UCL Great Ormond Street Institute of Child Health, London WC1N 1EH, UK; rachel.knowles{at}


Purpose To investigate ethnic differences in mortality for infants with congenital heart defects (CHDs) undergoing cardiac surgery or interventional catheterisation.

Design Observational study of survival to age 1 year using linked records from routine national paediatric cardiac surgery and intensive care audits. Mortality risk was investigated using multivariable Poisson models with multiple imputation. Predictors included sex, ethnicity, preterm birth, deprivation, comorbidities, prenatal diagnosis, age and weight at surgery, preprocedure deterioration and cardiac diagnosis.

Setting All paediatric cardiac surgery centres in England and Wales.

Patients 5350 infants with CHDs born from 2006 to 2009.

Main outcome measure Survival at age 1 year.

Results Mortality was 83.9 (95% CI 76.3 to 92.1) per 1000 infants, with variation by ethnic group. Compared with those of white ethnicity, infants in British Asian (Indian, Pakistani and Bangladeshi) and ‘all other’ (Chinese, mixed and other) categories experienced significantly higher mortality by age 1 year (relative risk [RR] 1.52[95% CI 1.19 to 1.95]; 1.62[95% CI 1.20 to 2.20], respectively), specifically during index hospital admission (RR 1.55 [95% CI 1.07 to 2.26]; 1.64 [95% CI 1.05 to 2.57], respectively). Further predictors of mortality included non-cardiac comorbidities, prenatal diagnosis, older age at surgery, preprocedure deterioration and cardiac diagnosis. British Asian infants had higher mortality risk during elective hospital readmission (RR 1.86 [95% CI 1.02 to 3.39]).

Conclusions Infants of British Asian and ‘all other’ non-white ethnicity experienced higher postoperative mortality risk, which was only partly explained by socioeconomic deprivation and access to care. Further investigation of case-mix and timing of risk may provide important insights into potential mechanisms underlying ethnic disparities.

  • cardiac surgery
  • cardiology
  • mortality
  • race and health

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  • Contributors RLK conceived the analysis and drafted the paper. RLK, DR and KB designed the study. RLK and DR performed the statistical analysis. DC and RCP undertook the linkage of audit data. RLK, DR, KB, SC, CB, JW, JT, RCGF, DJB, DC and RCP contributed to the interpretation of the data. All authors revised the work critically for important intellectual content and approved the manuscript for submission.

  • Funding The Infant Heart Study was funded by the UK National Institute for Health Research Health Services and Delivery Research (NIHR HS&DR) programme (Project No: 10/2002/29). Additional support was provided by the Health Foundation, UK. National Congenital Heart Disease Audit (NCHDA) and Paediatric Intensive Care Audit Network (PICANet) are commissioned by the Healthcare Quality Improvement Partnership (HQIP) as part of the National Clinical Audit Programme (NCA). HQIP is led by a consortium of the Academy of Medical Royal Colleges, the Royal College of Nursing and National Voices. Its aim is to promote quality improvement and, in particular, to increase the impact that clinical audit has on healthcare quality in England and Wales. HQIP holds the contract to manage and develop the NCA Programme, comprising more than 30 clinical audits that cover care provided to people with a wide range of medical, surgical and mental health conditions. The PICANet Audit is funded by NHS England, NHS Wales, NHS Lothian/National Service Division NHS Scotland, the Royal Belfast Hospital for Sick Children, the National Office of Clinical Audit (NOCA), Republic of Ireland and HCA Healthcare.

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

  • Competing interests None declared.

  • Ethics approval The study was approved by London-Central Research Ethics Committee (12/LO/1398) and given Section 251 support after review by the Health Research Authority Confidentiality Advisory Group (ECC6-02(FT5)/2012).

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

  • Data sharing statement Data were obtained from the NCHDA (12-CONG-07; 15-CONG-03) and PICANet (HQIP012) under data sharing agreements that do not permit further sharing. All original audit data used in this study are available from NCHDA and PICANet.

  • Patient consent for publication Not required.

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