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Understanding of Prognosis Among Parents of Children With Cancer: Parental Optimism and the Parent-Physician Interaction

Jennifer W. Mack, E. Francis Cook, Joanne Wolfe, Holcombe E. Grier, Paul D. Cleary, Jane C. Weeks

From the Departments of Pediatric Oncology and Adult Oncology, and the Center for Outcomes and Policy Research, Dana-Farber Cancer Institute; Department of Medicine, Children's Hospital; Department of Epidemiology, Harvard School of Public Health; Department of Health Care Policy, Harvard Medical School; and the Department of Medicine, Brigham and Women's Hospital, Boston, MA

Address reprint requests to Jennifer W. Mack, MD, MPH, Center for Outcomes and Policy Research, Dana-Farber Cancer Institute, 44 Binney St, Boston, MA 02115; e-mail: jennifer_mack{at}dfci.harvard.edu

Purpose: Patients often overestimate their chances of surviving cancer. Factors that contribute to accurate understanding of prognosis are not known. We assessed understanding of likelihood of cure and functional outcome among parents of children with cancer and sought to identify factors that place parents at risk for overly optimistic beliefs about prognosis.

Patients and Methods: We conducted a cross-sectional survey of 194 parents of children with cancer (response rate, 70%) who were treated at the Dana-Farber Cancer Institute and Children's Hospital in Boston, MA, and the children's physicians. Parent and physician expectations for likelihood of cure and functional outcome were compared. In 152 accurate or optimistic parents, we determined factors associated with accurate understanding of likelihood of cure compared with optimism.

Results: The majority of parents (61%) were more optimistic than physicians about the likelihood of cure. Parents' beliefs about other outcomes of cancer treatment were similar (quality-of-life impairment, P = .70) or more pessimistic (physical impairment, P = .01; intellectual impairment, P = .01) than physicians' beliefs. Parents and physicians were more likely to agree about chances of cure when physicians had confidence in knowledge of prognosis (odds ratio [OR] = 2.55, P = .004) and allowed parents to take their preferred decision-making role (OR = 1.89, P = .019).

Conclusion: Parents of children with cancer are overly optimistic about chances of cure but not about other outcomes of cancer therapy. Parents tend to be overly optimistic about cure when physicians have little confidence and when the decision-making process does not meet parents' preferences. These findings suggest that physicians are partly responsible for parents' unrealistic expectations about cure.

Supported by Fellowship No. T32 HS00063 from the Agency for Healthcare Research and Quality (J.W.M.), an American Society of Clinical Oncology Young Investigator Award (J.W.M.), and a fellowship from the Glaser Pediatric Research Network (J.W.M.).

Authors' disclosures of potential conflicts of interest and author contributions are found at the end of this article.

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