Parent perceptions of the quality of information received about a child's cancer

Abstract

Background: Parents' perceptions of the quality of information communicated by their child's oncologist about the child's cancer are not well understood.

Procedure: We conducted a cross-sectional survey of 194 parents of children with cancer (response rate 70%), treated at the Dana-Farber Cancer Institute and Boston Children's Hospital, Boston, Mass, and the children's physicians. Parents were asked to report the quality of information received about the child's cancer in several domains.

Results: Most parents reported that information about their child's cancer had been excellent (49%) or good (41%) overall, and ratings were similar for information about diagnosis (P = 0.62) and treatment (P = 0.59). Fewer parents felt they received high quality information about how cancer treatment is working (P < 0.001), likelihood of cure (P < 0.001), what the diagnosis means for the future (P < 0.001), and whether there is a cause for the child's cancer (P < 0.001). In multivariable models, parents were more likely to consider information of high quality when they also rated physician communication style highly. The accuracy of their knowledge on likelihood of cure and the child's future limitations, however, was not associated with quality ratings.

Conclusions: Although parents feel that they have received high quality cancer information overall, parents feel they receive lower quality information about issues relating to the child's future. Yet quality ratings are not associated with their actual knowledge. Parent perceptions of quality represent one, but not the only, facet of communication quality.

Keywords: communication; information; pediatric; prognosis.