Jennifer W Mack1, Hajime Uno2, Clare J Twist3, Rochelle Bagatell4, Abby R Rosenberg5, Araz Marachelian6, M Meaghan Granger7, Julia Glade Bender8, Justin N Baker9, Julie R Park10, Susan L Cohn11, Jorge H Fernandez12, Lisa R Diller12, Suzanne Shusterman12. 1. 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. 2. Division of Population Sciences' Center for Outcomes and Policy Research, Dana-Farber Cancer Institute, Boston, Massachusetts, USA. 3. Roswell Park Cancer Institute Buffalo, New York, New York, USA. 4. Division of Oncology, Department of Pediatrics, The Children's Hospital of Philadelphia and Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania, USA. 5. Department of Pediatric Hematology/Oncology, University of Washington School of Medicine, Seattle, Washington, USA; Pediatric Bioethics/Palliative Care, University of Washington School of Medicine, Seattle, Washington, USA; Seattle Children's Research Institute, Center for Clinical and Translational Research, Seattle, Washington, USA. 6. Children's Center for Cancer and Blood Diseases, Children's Hospital Los Angeles, Los Angeles, California, USA. 7. Hematology and Oncology Center, Cook Children's Hospital, Fort Worth, Texas, USA. 8. Department of Pediatric Oncology, Memorial Sloan-Kettering Cancer Center, New York, New York, USA. 9. Division of Quality of Life and Palliative Care, St Jude Children's Research Hospital, Memphis, Tennessee, USA. 10. Department of Pediatric Hematology/Oncology, University of Washington School of Medicine, Seattle, Washington, USA; Seattle Children's Research Institute, Center for Clinical and Translational Research, Seattle, Washington, USA. 11. Department of Pediatrics, Comer Children's Hospital, University of Chicago, Chicago, Illinois, USA. 12. Department of Pediatric Oncology, Dana-Farber Cancer Institute, Boston, Massachusetts, USA; Division of Pediatric Hematology/Oncology, Boston Children's Hospital, Boston, Massachusetts, USA.
Abstract
CONTEXT: Racial and ethnic disparities in end-of-life care are well documented among adults with advanced cancer. OBJECTIVES: To examine the extent to which communication and care differ by race and ethnicity among children with advanced cancer. METHODS: We 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. RESULTS: About 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. CONCLUSION: Parental 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.
CONTEXT: Racial and ethnic disparities in end-of-life care are well documented among adults with advanced cancer. OBJECTIVES: To examine the extent to which communication and care differ by race and ethnicity among children with advanced cancer. METHODS: We 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. RESULTS: About 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. CONCLUSION: Parental 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.
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