A mortality risk model to adjust for case mix in UK paediatric cardiac surgery

Background Congenital heart disease (CHD) is a relatively common disorder in childhood, affecting approximately 8–9 per 1000 live-born infants annually in the UK. CHD often involves serious abnormalities and is an important cause of childhood mortality, morbidity and disability. It is generally recognised that it is important and valuable to monitor outcomes in cardiac surgery and that, to do so fairly and effectively, one needs to risk stratify the case load of each unit. There is evidence that, since outcome monitoring in adult cardiac surgery became mandatory and routine, outcomes have improved. At present, no process for routinely monitoring risk-adjusted outcomes in paediatric cardiac surgery exists. Objectives To establish whether or not a risk model can be developed that is fit for the purpose of adjusting for case mix severity to facilitate routine monitoring of outcomes for paediatric cardiac surgery in the UK and to assess whether or not and how diagnostic information can augment procedural information in risk adjustment. Methods Data from the Central Cardiac Audit Database (CCAD) for all cardiac surgery procedures, excluding reoperations within 30 days, performed in the UK for patients 10% risk), in particular among neonates. This indicates that risk adjustment based on the current parameterisation of the model will potentially give an unduly negative impression of outcomes at those centres with a high proportion of high-risk cases. Finally, any risk model used for ongoing quality improvement initiatives needs to be regularly updated as data quality improves and clinical practice evolves. Conclusions For the first time diagnostic information has been successfully incorporated into risk adjustment for short-term outcomes in this patient group, which added discriminatory power. The risk model is fit for purpose, although the underestimation of risk in recent neonates is an important caveat. Several centres have expressed an interest in piloting the risk model and the accompanying monitoring tool. Future work includes developing software to generate variable life-adjusted display charts within units using the risk model; using the risk model to explore trends in case mix over time; and informing future work in evaluating long-term outcomes for children with CHD. Funding The National Institute for Health Research Health Services and Delivery Research programme.