High-intensity treatment is common at the end of life among children and young people who died of cancer: a retrospective cohort study

BACKGROUND: Annually, approximately 500 children and young people (aged <25 years) with cancer die in England. Little is known about the intensity of their end-of-life care. AIM: The primary aim of this study was to establish the prevalence of high-intensity treatment at the end of life in England and assess the relationship between high-intensity treatment and palliative care integration in main cancer treatment centres. The secondary aim was to assess the relationship between palliative care integration and place of death. DESIGN: Retrospective, national full-population cohort study. SETTING/PARTICIPANTS: English Cancer Registry data with linked hospitalisation, treatment and intensive care data were used to define a cohort aged <25 years who died in 2012-2020 and post-cancer diagnosis. High-intensity treatment was defined as any intravenous chemotherapy within 14 days of death or multiple hospitalisations, emergency department visits or any intensive care unit admission within 30 days of death. High-intensity treatment prevalence at the end of life and place of death were summarised by demographics, cancer type, main treatment centre and centre-level integration of palliative care. Logistic regression models explored associations with high-intensity treatment. RESULTS: 2208 (52%) of the cohort (n=4247) had high-intensity treatments at the end of life and 1911 (45%) died in hospital. High-intensity treatment prevalence varied by age at death and cancer type. There was no evidence of health inequalities in treatments, but minority ethnic groups and those living in more deprived areas had greater odds of dying in hospital. CONCLUSIONS: High-intensity treatment is common at the end of life among children and young people with cancer; however, its appropriateness is difficult to evaluate. Nevertheless, no evidence of health inequalities was noted, and hospital deaths remain most common.