Quantifying care provided to children and young people with cancer who die: Estimating the costs and key determining factors of NHS secondary care in England

Background Little is known about hospital use, costs, and factors associated with higher costs in end-of-life care for children and young people with cancer who die. Methods This is a retrospective death-outcome defined cohort study. It included 4,247 children and young people aged 0 to 24 years who had a cancer diagnosis, who were resident in England and who died between 01.01.12 and 31.12.20. Seven population-level datasets were linked to estimate hospital use and costs in the last year and last month of life. Key factors associated with costs were explored through regression analysis. Results Costs of end-of-life care varied substantially across hospital care settings, and by patient, treatment, and provider characteristics. Admitted patient care accounted for 81.3% and 69.5% of mean total care costs in the last year and last month respectively. Paediatric intensive care was the key driver in the highest individual cost case (£560,842). Across characteristics, costs were consistently higher during the last month compared to the average monthly cost in the last year, reflecting an increase in hospital care. Key factors associated with higher costs were use of high- intensity treatments prior to death; younger age at death; and haematological cancers. Minimal differences were observed across ethnicity and index of multiple deprivation. Conclusion Hospital use and related costs were explored to inform wider consideration of NHS care and equitable care delivery for this population. End-of-life care and associated costs for children and young people varied across settings, patient and provider characteristics. Further research is needed to explore key variations in costs and the impact for these patients of intense care activity.