Economic cost of paediatric heart disease in the United Kingdom: A national tertiary healthcare and societal cost-of-illness analysis using real-world data

Abstract Background/Aims This work aimed to estimate the annual tertiary healthcare and societal costs associated with paediatric congenital heart disease (CHD) in the United Kingdom using real-world data from a Level 1 cardiac surgical centre in the National Health Service (NHS). Methods A prevalence-based cost-of-illness analysis was conducted using patient-level inpatient and outpatient activity data from Evelina London Children’s Hospital between 1 June 2023 and 31 May 2024. Costs were estimated from NHS and societal perspectives and extrapolated to national level using National Congenital Heart Disease Audit (NCHDA) procedural activity data. Healthcare costs included tertiary centre care costs. Societal costs included parental productivity losses and impacts on lifetime earnings for children. Deterministic sensitivity analysis explored parameter uncertainty. Results Approximately 9.6% of UK paediatric CHD procedures were undertaken at Evelina London Children’s Hospital at a cost of £15.0 million per annum, corresponding to a national estimate of £156.4 million. Single-ventricle procedures accounted for 4.8% of inpatient activity but 19.4% of inpatient costs. Sensitivity analysis produced national healthcare cost estimates ranging from £125.1 million to £187.7 million. National productivity losses associated with parental absence from work were estimated at £82.4 million annually. Individuals with CHD were estimated to experience a mean reduction in lifetime earnings of £81,509. Conclusion Paediatric CHD imposes a substantial economic cost on the UK healthcare system and wider society. This study provides the first real-world national estimate of the economic impact of paediatric CHD in the UK and may inform future service planning, research investment, and innovation adoption strategies. Key Learning points 1. What is already known • Congenital heart disease (CHD) is the most common congenital abnormality worldwide and requires substantial healthcare utilisation throughout childhood, including outpatient monitoring, hospital admissions, surgical and catheter interventions. • Existing evidence suggests that CHD is associated with high healthcare costs and wider societal impacts; however, available economic burden studies have been conducted in the United States and are not generalisable to the UK healthcare system. • The broader economic consequences of paediatric CHD, including parental productivity losses and impacts on future employment and earnings, remain poorly quantified in the UK. 2. What this study adds • This study provides, to our knowledge, the first UK-wide estimate of the economic burden of paediatric CHD using real-world patient-level activity and cost data from a large volume tertiary centre. • Annual direct NHS costs associated with paediatric CHD care at tertiary settings were estimated at £156.4 million nationally, with an additional £82.4 million in parental productivity losses, demonstrating a substantial societal burden beyond healthcare expenditure alone. • Infants and patients with severe CHD requiring single-ventricle procedures accounted for a disproportionately large share of costs, highlighting important targets for future service improvement, research investment, and innovation.