Decisional Regret Among Parents of Children With Cancer

Abstract

Purpose Decision making is one of the ways in which parents serve as stewards of their children with cancer, but barriers to informed decision making among parents of children with cancer have been identified. We sought to evaluate the extent to which parents feel satisfied with, or regretful of, decisions made for their child's cancer treatment and to identify factors associated with heightened regret. Methods We surveyed 346 parents of children with cancer within 12 weeks of their initial cancer treatment decision and the children's physicians at Dana-Farber Cancer Institute/Boston Children's Hospital and the Children's Hospital of Philadelphia. Our main outcome measure was heightened regret as measured by the Decisional Regret Scale. Results Sixteen percent of parents (N = 54) met our definition of heightened decisional regret. In a multivariable logistic regression model, race/ethnicity was associated with regret, with black (odds ratio [OR], 6.55; 95% CI, 2.30 to 18.7), Hispanic (OR, 2.15; 95% CI, .69 to 6.65), and other race parents (OR, 4.68; 95% CI, 1.58 to 13.8) at increased risk for regret relative to whites ( P = .001 across all categories). In contrast, parents who reported receiving high-quality information (OR, .45; 95% CI, .23 to .91; P = .03) and detailed prognostic information (OR, .48; 95% CI, .24 to .96; P = .04), who trusted the oncologist completely (OR, .32; 95% CI, .17 to .63; P = .001), and who held their ideal role in decision making (OR, .49; 95% CI, .25 to .95; P = .04) were less likely to experience regret. Conclusion Although many parents are satisfied with decisions made for their children with cancer, racial and ethnic minority parents are at heightened risk for regret. Clinicians may be able to reduce this risk by providing high-quality information, including prognostic information, involving parents in decision making in the ways they wish, and serving as trusted providers.

Intended and unintended consequences: Ethics, communication, and prognostic disclosure in pediatric oncology

“…We queried the parents of children with cancer and their child's oncologist between November 2008 and April 2014 at the Dana‐Farber/Boston Children's Cancer and Blood Disorders Center and Children's Hospital of Philadelphia. Survey procedures were reported previously . Parents of children with cancer were approached 1 to 6 weeks after diagnosis.…”

“…The quality of the oncologist's communication style was assessed by asking parents how often he or she provided understandable answers, took enough time to answer parent questions, and conveyed information in a sensitive manner (never, sometimes, usually, or always) . Both indices previously have been validated among parents of children with cancer …”

Prognostic disclosures over time: Parental preferences and physician practices

“…27 Briefly, parent and physician questionnaires included items from previously developed surveys, 11,14 select new items that were not included in the current analysis, and select items from existing validated instruments. 27 Briefly, parent and physician questionnaires included items from previously developed surveys, 11,14 select new items that were not included in the current analysis, and select items from existing validated instruments.…”

Advancing the field of communication research in pediatric oncology: A systematic review of the literature analyzing medical dialogue

“…Parents of children with cancer rate the communication skills of their child's oncologist as a critical component of the illness and treatment experience, and parents are more likely to believe that oncologists provided high quality information when they also rate the provider's communication style highly . Better communication has also been associated with parental report of increased hope, decreased decisional regret, and improved psychosocial outcomes …”