title: Predictors of and Trends in High-Intensity End-of-Life Care Among Children With Cancer: A Population-Based Study Using Health Services Data.
abstract: Purpose Children with cancer often receive high-intensity (HI) medical care at the end-of-life (EOL). Previous studies have been limited to single centers or lacked detailed clinical data. We determined predictors of and trends in HI-EOL care by linking population-based clinical and health-services databases. Methods A retrospective decedent cohort of patients with childhood cancer who died between 2000 and 2012 in Ontario, Canada, was assembled using a provincial cancer registry and linked to population-based health-care data. Based on previous studies, the primary composite measure of HI-EOL care comprised any of the following: intravenous chemotherapy < 14 days from death; more than one emergency department visit; and more than one hospitalization or intensive care unit admission < 30 days from death. Secondary measures included those same individual measures and measures of the most invasive (MI) EOL care (eg, mechanical ventilation < 14 days from death). We determined predictors of outcomes with appropriate regression models. Sensitivity analysis was restricted to cases of cancer-related mortality, excluding treatment-related mortality (TRM) cases. Results The study included 815 patients; of these, 331 (40.6%) experienced HI-EOL care. Those with hematologic malignancies were at highest risk (odds ratio, 2.5; 95% CI, 1.8 to 3.6; P < .001). Patients with hematologic cancers and those who died after 2004 were more likely to experience the MI-EOL care (eg, intensive care unit, mechanical ventilation, odds ratios from 2.0 to 5.1). Excluding cases of TRM did not substantively change the results. Conclusion Ontario children with cancer continue to experience HI-EOL care. Patients with hematologic malignancies are at highest risk even when excluding TRM. Of concern, rates of the MI-EOL care have increased over time despite increased palliative care access. Linking health services and clinical data allows monitoring of population trends in EOL care and identifies high-risk populations for future interventions.
authors.affiliation: Alisha Kassam, Kimberley Widger, Adam Rapoport, Katherine Nelson, and Sumit Gupta, The Hospital for Sick Children; Alisha Kassam, Kimberley Widger, Adam Rapoport, and Sumit Gupta, University of Toronto; Rinku Sutradhar, Jason D. Pole, Craig C. Earle, and Sumit Gupta, Institute for Clinical Evaluative Sciences; Adam Rapoport, Emily's House Children's Hospice; and Jason D. Pole, Pediatric Oncology Group of Ontario, Toronto; Alisha Kassam, Southlake Regional Health Centre, Newmarket, Ontario, Canada; and Joanne Wolfe, Dana-Farber Cancer Institute and Boston Children's Hospital, Boston, MA.
authors.forename: Alisha
authors.initials: A
authors.lastname: Kassam
authors.affiliation: Alisha Kassam, Kimberley Widger, Adam Rapoport, Katherine Nelson, and Sumit Gupta, The Hospital for Sick Children; Alisha Kassam, Kimberley Widger, Adam Rapoport, and Sumit Gupta, University of Toronto; Rinku Sutradhar, Jason D. Pole, Craig C. Earle, and Sumit Gupta, Institute for Clinical Evaluative Sciences; Adam Rapoport, Emily's House Children's Hospice; and Jason D. Pole, Pediatric Oncology Group of Ontario, Toronto; Alisha Kassam, Southlake Regional Health Centre, Newmarket, Ontario, Canada; and Joanne Wolfe, Dana-Farber Cancer Institute and Boston Children's Hospital, Boston, MA.
authors.forename: Rinku
authors.initials: R
authors.lastname: Sutradhar
authors.affiliation: Alisha Kassam, Kimberley Widger, Adam Rapoport, Katherine Nelson, and Sumit Gupta, The Hospital for Sick Children; Alisha Kassam, Kimberley Widger, Adam Rapoport, and Sumit Gupta, University of Toronto; Rinku Sutradhar, Jason D. Pole, Craig C. Earle, and Sumit Gupta, Institute for Clinical Evaluative Sciences; Adam Rapoport, Emily's House Children's Hospice; and Jason D. Pole, Pediatric Oncology Group of Ontario, Toronto; Alisha Kassam, Southlake Regional Health Centre, Newmarket, Ontario, Canada; and Joanne Wolfe, Dana-Farber Cancer Institute and Boston Children's Hospital, Boston, MA.
authors.forename: Kimberley
authors.initials: K
authors.lastname: Widger
authors.affiliation: Alisha Kassam, Kimberley Widger, Adam Rapoport, Katherine Nelson, and Sumit Gupta, The Hospital for Sick Children; Alisha Kassam, Kimberley Widger, Adam Rapoport, and Sumit Gupta, University of Toronto; Rinku Sutradhar, Jason D. Pole, Craig C. Earle, and Sumit Gupta, Institute for Clinical Evaluative Sciences; Adam Rapoport, Emily's House Children's Hospice; and Jason D. Pole, Pediatric Oncology Group of Ontario, Toronto; Alisha Kassam, Southlake Regional Health Centre, Newmarket, Ontario, Canada; and Joanne Wolfe, Dana-Farber Cancer Institute and Boston Children's Hospital, Boston, MA.
authors.forename: Adam
authors.initials: A
authors.lastname: Rapoport
authors.affiliation: Alisha Kassam, Kimberley Widger, Adam Rapoport, Katherine Nelson, and Sumit Gupta, The Hospital for Sick Children; Alisha Kassam, Kimberley Widger, Adam Rapoport, and Sumit Gupta, University of Toronto; Rinku Sutradhar, Jason D. Pole, Craig C. Earle, and Sumit Gupta, Institute for Clinical Evaluative Sciences; Adam Rapoport, Emily's House Children's Hospice; and Jason D. Pole, Pediatric Oncology Group of Ontario, Toronto; Alisha Kassam, Southlake Regional Health Centre, Newmarket, Ontario, Canada; and Joanne Wolfe, Dana-Farber Cancer Institute and Boston Children's Hospital, Boston, MA.
authors.forename: Jason D
authors.initials: JD
authors.lastname: Pole
authors.affiliation: Alisha Kassam, Kimberley Widger, Adam Rapoport, Katherine Nelson, and Sumit Gupta, The Hospital for Sick Children; Alisha Kassam, Kimberley Widger, Adam Rapoport, and Sumit Gupta, University of Toronto; Rinku Sutradhar, Jason D. Pole, Craig C. Earle, and Sumit Gupta, Institute for Clinical Evaluative Sciences; Adam Rapoport, Emily's House Children's Hospice; and Jason D. Pole, Pediatric Oncology Group of Ontario, Toronto; Alisha Kassam, Southlake Regional Health Centre, Newmarket, Ontario, Canada; and Joanne Wolfe, Dana-Farber Cancer Institute and Boston Children's Hospital, Boston, MA.
authors.forename: Katherine
authors.initials: K
authors.lastname: Nelson
authors.affiliation: Alisha Kassam, Kimberley Widger, Adam Rapoport, Katherine Nelson, and Sumit Gupta, The Hospital for Sick Children; Alisha Kassam, Kimberley Widger, Adam Rapoport, and Sumit Gupta, University of Toronto; Rinku Sutradhar, Jason D. Pole, Craig C. Earle, and Sumit Gupta, Institute for Clinical Evaluative Sciences; Adam Rapoport, Emily's House Children's Hospice; and Jason D. Pole, Pediatric Oncology Group of Ontario, Toronto; Alisha Kassam, Southlake Regional Health Centre, Newmarket, Ontario, Canada; and Joanne Wolfe, Dana-Farber Cancer Institute and Boston Children's Hospital, Boston, MA.
authors.forename: Joanne
authors.initials: J
authors.lastname: Wolfe
authors.affiliation: Alisha Kassam, Kimberley Widger, Adam Rapoport, Katherine Nelson, and Sumit Gupta, The Hospital for Sick Children; Alisha Kassam, Kimberley Widger, Adam Rapoport, and Sumit Gupta, University of Toronto; Rinku Sutradhar, Jason D. Pole, Craig C. Earle, and Sumit Gupta, Institute for Clinical Evaluative Sciences; Adam Rapoport, Emily's House Children's Hospice; and Jason D. Pole, Pediatric Oncology Group of Ontario, Toronto; Alisha Kassam, Southlake Regional Health Centre, Newmarket, Ontario, Canada; and Joanne Wolfe, Dana-Farber Cancer Institute and Boston Children's Hospital, Boston, MA.
authors.forename: Craig C
authors.initials: CC
authors.lastname: Earle
authors.affiliation: Alisha Kassam, Kimberley Widger, Adam Rapoport, Katherine Nelson, and Sumit Gupta, The Hospital for Sick Children; Alisha Kassam, Kimberley Widger, Adam Rapoport, and Sumit Gupta, University of Toronto; Rinku Sutradhar, Jason D. Pole, Craig C. Earle, and Sumit Gupta, Institute for Clinical Evaluative Sciences; Adam Rapoport, Emily's House Children's Hospice; and Jason D. Pole, Pediatric Oncology Group of Ontario, Toronto; Alisha Kassam, Southlake Regional Health Centre, Newmarket, Ontario, Canada; and Joanne Wolfe, Dana-Farber Cancer Institute and Boston Children's Hospital, Boston, MA.
authors.forename: Sumit
authors.initials: S
authors.lastname: Gupta
mesh_terms: D000293:Adolescent; D002648:Child; D002675:Child, Preschool; D016208:Databases, Factual; D005260:Female; D005544:Forecasting; D006801:Humans; D007223:Infant; D008297:Male; D009369:Neoplasms / Q000628:therapy*; D009864:Ontario; D012189:Retrospective Studies; D013727:Terminal Care / Q000639:trends*