R code for analysing national data from England on Congenital Heart Disease

Ferran Espuny Pujol, Qi Huang, John Stickley, Rodney CG Franklin, Katherine Brown, Jiaqiu Wang, Sonya Crowe, Christina Pagel

Description

R code used for research on Congenital Heart Disease (CHD) by the UCL Clinical Operational Research Unit (CORU) in the projects:

• LAUNCHES QI - Linking audit and national datasets in congenital heart services for quality improvement;
• CHAMPION - Congenital heart audit: measuring progress in outcomes nationally (CHAMPION).

Note that although most of the code used in the research projects was in Stata, we have converted it to R for sharing.

Code organization

• Data Cleaning
• Patient Trajectories
• Diagnosis and Comorbidity Identification
• Outcomes of Interest
• Risk Models
• Pathways of care for specific diagnoses

Additional R code can be found in the UCL CORU site for: * Linkage of records using patient identifiers

Acknowledgements

We are grateful to Libby Rogers, a previous UCL CORU researcher, whose Stata code served as starting point for working with NCHDA data.

We are grateful to the LAUNCHES QI and CHAMPION project teams and collaborators.

The LAUNCHES QI project and this CHD research R code were funded by the Health Foundation, an independent charity committed to bringing about better health and health care for people in the United Kingdom (Award number 685009).

The CHAMPION project was funded by the National Institute for Health and Care Research (NIHR) Department of Health and Social Care Policy Research Programme (grant number PR‐R20‐0318‐23 001).

References

The following papers have used the code included in this repository, albeit in Stata and (mostly) not in R.

• F. Espuny-Pujol, C. Pagel, G. Ambler, et al. New models for risk-adjusted monitoring of post-surgical complications and mortality in adult congenital heart disease in England and Wales. Ann Thorac Surg, In Press Available online: 14 August 2025.
• D.M Dorobantu, Q. Huang, F. Espuny-Pujol, et al. Contemporary outcomes of childhood aortic coarctation interventions: a national registry analysis of mortality, reinterventions, and hospital resource use. Heart, Published Online First: 08 July 2025.
• K.L Brown, Q. Huang, F. Espuny-Pujol, et al. A cohort evaluation of surgical pathways reported to national audit for children undergoing treatment for congenital heart disease in England and Wales. J Thorac Cardiovasc Surg, 170(2):316-324.e13. 2025.
• K.M. English, F. Espuny-Pujol, R.C. Franklin, et al. Secundum atrial septal defect closure in adults in the UK. Eur Heart J - Qual Care Clin Outcomes, 11(1):78–88. 2025.
• K.L Brown, Q. Huang, F. Espuny-Pujol, et al. Evaluating long-term outcomes of children undergoing surgical treatment for congenital heart disease for national audit in England and Wales. J Am Heart Assoc, 13(21):e035166. 2024.
• D. Dorobantu, F. Espuny Pujol, M. Kostolny, et al. Arterial switch for transposition of the great arteries: treatment timing, late outcomes and risk factors. J Am Coll Cardiol Adv, 2(5):100407. 2023.
• D. Dorobantu, Q. Huang, F. Espuny Pujol, et al. Hospital resource utilization in a national cohort of functionally single ventricle patients undergoing surgical treatment. J Thorac Cardiov Surg Open, 14:441–461. 2023.
• F. Espuny Pujol, R.C. Franklin, S. Crowe, et al. Transfer of Congenital Heart Patients from Paediatric to Adult services in England. Heart, 108(24):1964–1971. 2022.
• F. Espuny Pujol, C. Pagel, K.L. Brown, et al. Linkage of National Congenital Heart Disease Audit data to hospital, critical care and mortality national datasets to enable research focused on quality improvement. BMJ Open, 12:e057343. 2022.
• J.A. Taylor, S. Crowe, F. Espuny Pujol, et al. The road to hell is paved with good intentions: the experience of applying for national data for linkage and suggestions for improvement. BMJ Open, 11:e047575. 2021.