• Run by University College London.
  • Aims to improve services for congenital heart disease by linking five national datasets.
  • Will describe patient trajectories through secondary and tertiary care from birth to adulthood; identify metrics for driving quality improvement and informing commissioning; and explore variation across services to identify priorities.
  • Will run from March 2018 to October 2020.

Services for congenital heart disease (CHD) span a patient’s lifetime, from birth through to adulthood. However, the quality of these services is currently only measured by 30 day survival following children’s heart surgery. 30-day survival is now almost 98%, so this is no longer a good proxy for quality.

Medical advances mean that adults with CHD now outnumber children with CHD, but there is no routine monitoring of adult services, nor of the important transition from child to adult services.

This project, led by a team of clinicians, commissioners, patient representatives and academics from University College London, will address the gaps in how quality of CHD care is measured and reported in England.

The work involves linking the national CHD audit dataset to four national datasets encompassing hospital admissions and life status. This will enable the trajectory of CHD patients through the NHS to be described over the course of their lives, for example analysing how many hospital admissions they have, and what happens when children become adults. It will include information on utilisation and outcomes.

Variation in the provision of care across England will be assessed and opportunities for improvement identified.

The project will produce the first comprehensive understanding of care received by a complex population from birth to adulthood. This will be the basis for a step change in how quality in CHD services is measured and improved.

It will also be a template for how national datasets can be successfully linked and used to understand variation and drive quality improvement for other lifelong conditions, such as renal disease, haemophilia and cystic fibrosis.

Contact details

For more information about this project, please contact Dr Christina Pagel, Reader in Operational Research, University College London, c.pagel@ucl.ac.uk, or Dr Sonya Crowe, Lecturer in Operational Research, University College London.

About this programme


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