Maya F Ilowite1,2,3, Angel M Cronin2, Tammy I Kang4, Jennifer W Mack1,2,3. 1. Department of Pediatric Oncology, Dana-Farber Cancer Institute, Boston, Massachusetts. 2. Division of Population Sciences' Center for Outcomes and Policy Research, Dana-Farber Cancer Institute, Boston, Massachusetts. 3. Division of Pediatric Hematology/Oncology, Boston Children's Hospital, Boston, Massachusetts. 4. Section of Palliative Care, Texas Children's Hospital, Baylor College of Medicine, Houston, Texas.
Abstract
BACKGROUND: Most parents of children with cancer say they want detailed information about their child's prognosis. However, prior work has been conducted in populations of limited diversity. The authors sought to evaluate the impact of parental race/ethnicity on prognosis communication experiences among parents of children with cancer. METHODS: In total, 357 parents of children with cancer and the children's physicians were surveyed at Dana-Farber Cancer Institute/Boston Children's Hospital and Children's Hospital of Philadelphia. Outcome measures were parental preferences for prognostic information, physician beliefs about parental preferences, prognosis communication processes, and communication outcomes. Associations were assessed by logistic regression with generalized estimating equations to correct for physician clustering. RESULTS: Two hundred eighty-one parents (79%) were white, 23 (6%) were black, 29 (8%) were Hispanic, and 24 (7%) were Asian/other. Eighty-seven percent of parents wanted as much detail as possible about their child's prognosis, with no significant differences by race/ethnicity (P = .75). However, physician beliefs about parental preferences for prognosis communication varied based on parent race/ethnicity, with physicians considering black and Hispanic parents less interested in details about prognosis than whites (P = .003). Accurate understanding of a less favorable prognosis was greater among white (49%) versus nonwhite parents (range, 20%-29%), although this difference was not statistically significant (P = .14). CONCLUSIONS: Most parents, regardless of racial and ethnic background, want detailed prognostic information about their child's cancer. However, physicians underestimate the information needs of black and Hispanic parents. To meet parents' information needs, physicians should ask about parents' information preferences before prognosis discussions. Cancer 2017;123:3995-4003.
BACKGROUND: Most parents of children with cancer say they want detailed information about their child's prognosis. However, prior work has been conducted in populations of limited diversity. The authors sought to evaluate the impact of parental race/ethnicity on prognosis communication experiences among parents of children with cancer. METHODS: In total, 357 parents of children with cancer and the children's physicians were surveyed at Dana-Farber Cancer Institute/Boston Children's Hospital and Children's Hospital of Philadelphia. Outcome measures were parental preferences for prognostic information, physician beliefs about parental preferences, prognosis communication processes, and communication outcomes. Associations were assessed by logistic regression with generalized estimating equations to correct for physician clustering. RESULTS: Two hundred eighty-one parents (79%) were white, 23 (6%) were black, 29 (8%) were Hispanic, and 24 (7%) were Asian/other. Eighty-seven percent of parents wanted as much detail as possible about their child's prognosis, with no significant differences by race/ethnicity (P = .75). However, physician beliefs about parental preferences for prognosis communication varied based on parent race/ethnicity, with physicians considering black and Hispanic parents less interested in details about prognosis than whites (P = .003). Accurate understanding of a less favorable prognosis was greater among white (49%) versus nonwhite parents (range, 20%-29%), although this difference was not statistically significant (P = .14). CONCLUSIONS: Most parents, regardless of racial and ethnic background, want detailed prognostic information about their child's cancer. However, physicians underestimate the information needs of black and Hispanic parents. To meet parents' information needs, physicians should ask about parents' information preferences before prognosis discussions. Cancer 2017;123:3995-4003.
Authors: Maya F Ilowite; Hasan Al-Sayegh; Clement Ma; Veronica Dussel; Abby R Rosenberg; Chris Feudtner; Tammy I Kang; Joanne Wolfe; Kira Bona Journal: Cancer Date: 2018-09-14 Impact factor: 6.860
Authors: 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; Suzanne Shusterman Journal: J Pain Symptom Manage Date: 2020-04-30 Impact factor: 3.612
Authors: Amulya A Nageswara Rao; Deepti M Warad; Amy L Weaver; Cathy D Schleck; Vilmarie Rodriguez Journal: J Cancer Educ Date: 2019-06 Impact factor: 2.037