• Jennifer W Mack, Hajime Uno, Clare J Twist, Rochelle Bagatell, Abby R Rosenberg, Araz Marachelian, M Meaghan Granger, Julia Glade Bender, Justin N Baker, Julie R Park, Susan L Cohn, Jorge H Fernandez, Lisa R Diller, and Suzanne Shusterman.
• Department of Pediatric Oncology, Dana-Farber Cancer Institute, Boston, Massachusetts, USA; Division of Population Sciences' Center for Outcomes and Policy Research, Dana-Farber Cancer Institute, Boston, Massachusetts, USA; Division of Pediatric Hematology/Oncology, Boston Children's Hospital, Boston, Massachusetts, USA. Electronic address: Jennifer_mack@dfci.harvard.edu.
• J Pain Symptom Manage. 2020 Oct 1; 60 (4): 782-789.

ContextRacial and ethnic disparities in end-of-life care are well documented among adults with advanced cancer.ObjectivesTo examine the extent to which communication and care differ by race and ethnicity among children with advanced cancer.MethodsWe conducted a prospective cohort study at nine pediatric cancer centers enrolling 95 parents (42% racial/ethnic minorities) of children with poor prognosis cancer (relapsed/refractory high-risk neuroblastoma). Parents were surveyed about whether prognosis was discussed; likelihood of cure; intent of current treatment; and primary goal of care. Medical records were used to identify high-intensity medical care since the most recent recurrence. Logistic regression evaluated differences between white non-Hispanic and minority (black, Hispanic, and Asian/other race) parents.ResultsAbout 26% of parents recognized the child's low likelihood of cure. Minority parents were less likely to recognize the poor prognosis (odds ratio [OR] = 0.19; 95% CI = 0.06-0.63; P = 0.006) and the fact that current treatment was unlikely to offer cure (OR = 0.07; 95% CI = 0.02-0.27; P < 0.0001). Children of minority parents were more likely to experience high-intensity medical care (OR = 3.01; 95% CI = 1.29-7.02; P = 0.01). After adjustment for understanding of prognosis, race/ethnicity was no longer associated with high-intensity medical care (adjusted odds ratio = 2.14; 95% CI = 0.84-5.46; P = 0.11), although power to detect an association was limited.ConclusionParental understanding of prognosis is limited across racial and ethnic groups; racial and ethnic minorities are disproportionately affected. Perhaps as a result, minority children experience higher rates of high-intensity medical care. Work to improve prognostic understanding should include focused work to meet needs of minority populations.Copyright © 2020 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

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