Disparities in prognosis communication among parents of children with cancer: The impact of race and ethnicity.

Abstract

6562 Background: Most parents of children with cancer say they want detailed prognostic information about their child’s cancer. However, prior work has been conducted in populations of limited diversity. We sought to evaluate the impact of parental race/ethnicity on prognosis communication experiences amongst parents of children with cancer. Methods: We surveyed 357 parents of children with cancer, and the children’s physicians at Dana-Farber Cancer Institute/Boston Children’s Hospital and Children’s Hospital of Philadelphia. Our outcome measures were parental preferences for prognostic information, physician beliefs about parental preferences, prognosis communication processes and communication outcomes. Except where noted, associations were assessed by logistic regression with generalized estimating equations to correct for physician clustering. Results: 87% of parents wanted as much detail as possible about their child’s prognosis, with no significant differences by race/ethnicity (P = .50). Physician beliefs about parental preferences for prognosis communication varied based on parent race/ethnicity. 60% of physicians for White parents reported they believed parents wanted as much detail as possible about their child’s prognosis, versus 36%, 38%, and 64% of physicians, respectively, for Black, Hispanic, and Asian/Other parents (P = .04). Parent race/ethnicity was not associated with actual prognostic disclosure as reported by parents (P = .79) or by physicians (P = .61). Accurate understanding of prognosis was higher amongst White (51%) versus non-White parents (range 22%-29%), although this difference was not statistically significant (P = .13, unadjusted). Conclusions: The majority of parents, regardless of racial and ethnic background, want detailed prognostic information about their child’s cancer. However, physicians rarely recognize the information needs of Black and Hispanic parents. Despite this discrepancy, prognosis communication outcomes were largely equivalent. Our findings suggest that in order to meet parents’ information needs, physicians should ask about the information preferences of parents of children with cancer prior to prognosis discussions.