Racial and Ethnic Differences in Communication and Care for Children With Advanced Cancer
pediatric; prognosis; cancer; end-of-life; disparities; communication
Context: Racial and ethnic disparities in end-of-life care are well documented among adults with advanced cancer. Objective(s): To examine the extent to which communication and care differ by race and ethnicity among children with advanced cancer. Method(s): 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. Result(s): 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(s): 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. Copyright © 2020 American Academy of Hospice and Palliative Medicine
Mack J W; Uno H; Twist C J; Bagatell R; Rosenberg A R; Marachelian A; Granger M M; Glade Bender J; Baker J N; Park J R; Cohn S L; Fernandez J H; Diller L R; Shusterman S
Journal of Pain and Symptom Management
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpainsymman.2020.04.020" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.04.020</a>
Unrealistic parental expectations for cure in poor-prognosis childhood cancer
child; human; patient care; controlled study; female; major clinical study; male; cohort analysis; article; priority journal; childhood cancer; cancer recurrence; quality of life; confidence interval; cancer palliative therapy; interpersonal communication; expectation; clinical decision making; parental behavior; prospective study; cancer prognosis; neuroblastoma; questionnaire; medical record; pediatric patient; cancer risk; theoretical model; high risk population; odds ratio
Background: Many parents of children with advanced cancer pursue curative goals when cure is no longer possible. To the authors' knowledge, no pediatric studies to date have prospectively evaluated prognosis communication or influences on decision making in poor-prognosis childhood cancer.
Mack J W; Cronin A M; Uno H; Shusterman S; Twist C J; Bagatell R; Rosenberg A; Marachelian A; Granger M M; Glade Bender J; Baker J N; Park J; Cohn S L; Levine A; Taddei S; Diller L R
Cancer
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1002/cncr.32553" target="_blank" rel="noreferrer noopener">10.1002/cncr.32553</a>