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High-intensity end-of-life care among children, adolescents, and young adults with cancer who die in the hospital: A population-based study from the French national hospital database

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Revon-Riviere, G.; Pauly, V.; Baumstarck, K.; Bernard, C.; Andre, N.; Gentet, J. C.; Seyler, C.; Fond, G.; Orleans, V.; Michel, G.; Auquier, P.; Boyer, L.

BACKGROUND: Efforts to improve the quality of end-of-life (EOL) care depend on better knowledge of the care that children, adolescents, and young adults with cancer receive, including high-intensity EOL (HI-EOL) care. The objective was to assess the rates of HI-EOL care in this population and to determine patient- and hospital-related predictors of HI-EOL from the French national hospital database. METHODS: This was a population-based, retrospective study of a cohort of patients aged 0 to 25 years at the time of death who died at hospital as a result of cancer in France between 2014 and 2016. The primary outcome was HI-EOL care, defined as the occurrence of >/=1 chemotherapy session <14 days from death, receiving care in an intensive care unit >/=1 time, >1 emergency room admission, and >1 hospitalization in an acute care unit in the last 30 days of life. RESULTS: The study included 1899 individuals from 345 hospitals; 61.4% experienced HI-EOL care. HI-EOL was increased with social disadvantage (adjusted odds ratio [AOR], 1.30; 95% confidence interval [CI], 1.03-1.65; P = .028), hematological malignancies (AOR, 2.09; 95% CI, 1.57-2.77; P < .001), complex chronic conditions (AOR, 1.60; 95% CI, 1.23-2.09; P = .001) and care delivered in a specialty center (AOR, 1.70; 95% CI, 1.22-2.36; P = .001). HI-EOL was reduced in cases of palliative care (AOR, 0.31; 95% CI, 0.24-0.41; P < .001). CONCLUSION: A majority of children, adolescents, and young adults experience HI-EOL care. Several features (eg, social disadvantage, cancer diagnosis, complex chronic conditions, and specialty center care) were associated with HI-EOL care. These findings should now be discussed with patients, families, and professionals to define the optimal EOL.

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