Child/Adolescent Health

Parents prefer as much information as possible about the prognosis of their child's cancer

To avoid causing pain or loss of hope to parents of children with cancer, compassionate doctors often avoid the topic of the child's prognosis, disclose vague or overly optimistic information when pressed, or focus on treatment rather than expected outcomes. However, this limited communication can inappropriately alter choices that parents make about treatment. Many parents want to have prognostic information even though they find it upsetting, concludes a new study.

The delivery of detailed information may be a fundamental part of sensitive care, note the researchers. They surveyed 194 parents whose children were treated for cancer at a Boston medical center (along with their physicians) about how upsetting they found the information about their child's cancer prognosis. The majority of parents (87 percent) wanted as much information about the prognosis as possible, and 85 percent even wanted it expressed numerically. Yet one-third of parents said that the oncologist did not initiate a discussion about prognosis. Also, more than one-fourth of parents said they did not receive numeric prognostic information, despite considering it important.

Over one-third (36 percent) of parents found the information about prognosis to be extremely or very upsetting. Parents who were upset were more likely to report that the oncologist had never discussed their child's prognosis. Yet these were the parents who were more likely to want additional information about prognosis than those who were less upset. The majority of parents found prognostic information important to maintaining hope, even when it was upsetting or the child's prognosis was poor. Parents have the capacity to hope for a cure while simultaneously preparing for the possibility of death, but they need information to do so, conclude the researchers. Their study was supported in part by the Agency for Healthcare Research and Quality (HS00063).

See "Communication about prognosis between parents and physicians of children with cancer: Parent preferences and the impact of prognostic information," by Jennifer W. Mack, M.D., Joanne Wolfe, M.D., M.P.H., Holcombe E. Grier, M.D., and others, in the November 20, 2006, Journal of Clinical Oncology 24(33), pp. 5265-5270.

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