Long title:
Linking AUdit and National datasets in Congenital HEart Services for Quality Improvement
Short title:
LAUNCHES QI
Chief Investigators:
Professor Christina Pagel
Co-Investigators:
Julie A Taylor, Sonya Crowe, Ferran Espuny Pujol, Rodney C Franklin, Richard G Feltbower, Lee J Norman, James Doidge, Doug William Gould.
Organisation:
University College London (UCL).
Funder:
The charity, the Health Foundation
Lay Summary:
Our aim is to improve services for congenital heart disease (CHD) and provide a template for other lifelong conditions by linking five national datasets to provide much better information on services. \n\nLifelong conditions are complex and expensive to treat and navigating both system and illness can be difficult for patients and families. Services for CHD span a patient’s lifetime, but their quality is mainly measured by 30-day survival following children’s heart surgery. 30-day survival, now almost 98%, is no longer a good proxy for quality. As more patients survive into adulthood and the number of adults with CHD outnumbers the paediatric population, the lack of routine monitoring of adult services and the quality of transition from child services is increasingly problematic. The NHS England CHD review 2015 identified areas where improvements could be made, but there is no adequate system for defining, measuring, acting upon or reporting these areas. Examples are: addressing barriers to accessing care; reducing complications following surgery; reducing loss to follow up after hospital discharge and transition to adult services, and better reporting for adult patients. We know little about these aspects and understanding them requires combining information from different datasets. There could exist significant variation in care provided by CHD services across England.\n\nWe will link for the first time NCHDA (National Congenital Heart Disease Audit), PICAnet (paediatric intensive care audit), ICNARC CMP (adult intensive care audit), ONS and HES (Hospital Episode Statistics) data. This will provide information on how to link national data sets and whether it is feasible to do this routinely, and create a research database to examine the care given to CHD patients from multiple perspectives. We will: describe patient care trajectories; identify metrics for driving quality improvement (QI), informing commissioning and policy; explore variation across services to identify priorities for QI.