Long title:
Congenital Heart Audit: Measuring Progress In Outcomes Nationally (2019 – 2022)
Short title:
CHAMPION
Chief Investigator:
Dr Sonya Crowe
Co-Investigators:
Dr Adrian Chester, Dr Christina Pagel, Dr Katherine von Klemperer, Dr Louise Coats, Dr Rodney Franklin, Dr Trevor Richens, Mr Serban Stoica, Mrs Lynda Shaughnessy, Ms Carin Van Doorn, Ms Fiona Kennedy, Professor Attilio Lotto, Professor Gareth Ambler, Professor Jo Wray, Professor Katherine Brown, Professor Victor Tsang
Organisation:
University College London (UCL)
Funder:
National Institute for Health Research (NIHR)
Lay Summary:
We will apply to use the LAUNCHES data, which links national audit data on procedures for congenital heart disease and admissions to adult and paediatric intensive care, life status from ONS and Hospital Episode Statistics (HES). We will use this data to answer the following questions:
1) What happens to adults after operations?
The percentage of adults surviving certain procedures are publicly reported, but there is no overview by hospital because there is no way to take into account the complexity of each operation. Working with clinicians, patients and charities, we will identify what outcomes capture quality of service (including survival one month after surgery) and how these can be reported fairly, developing risk adjustment methods where needed.
2) What happens in the longer-term for a person?
From both a patient and an NHS perspective, it is more relevant to understand what happens to people over the longer-term (and possibly many operations) rather than just one month after surgery. Working with clinicians, patients and charities, we will choose a range of CHD diagnoses from relatively straightforward to very complex and track people with each of these through the combined dataset, describing their:
• Long-term survival;
• How many operations and hospital stays they have;
• How many operations are outside the anticipated treatment pla