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ASCO: Don't Keep Child's Prognosis from Parents, Researchers Say


CHICAGO -- Parents of children with cancer gain hope from information about the prognosis, even when the outlook is poor, according to a survey.

CHICAGO, June 4 -- Parents of children with cancer gain hope from information about the prognosis, even when the outlook is poor, according to a survey.

Every additional bit of news from the physician about prognosis doubled the likelihood of hope when the prognosis was good and actually increased the odds of hope six-fold when there was less than a 25% chance of cure, found Jennifer W. Mack, M.D., M.P.H., of the Dana-Farber Cancer Institute in Boston, and colleagues.

"This finding is in contrast to the commonly held belief among physicians that prognostic disclosure might make parents feel less hopeful," said Dr. Mack, who presented the findings at the American Society of Clinical Oncology meeting.

Previous studies showed that the majority of parents reported wanting as much information as possible on the prognosis of their child's cancer, even if it was upsetting, she said.

"They say that this kind of information -- such as the likelihood that the child will be cured -- helps them make decisions for the care of their children," Dr. Mack said.

"But despite the importance of prognostic information to decision making, physicians are often reluctant to give prognostic information, in part because they worry that bad news could take hope away," she continued.

Because of this fear, physicians sometimes withhold information, give overly optimistic estimates, or discuss prognosis only in vague terms, she said.

To get more data in this area, the researchers surveyed 194 parents of children with cancer within their first year of treatment at the Dana-Farber Cancer Institute and Children's Hospital Boston. They also surveyed the children's physicians.

Parents completed retrospective questionnaires on how much prognostic information they received, how the information was received -- whether offered or elicited, written or oral -- and the extent to which communication with the physicians made them feel hopeful.

"Strikingly, parents were more likely to report that communication made them feel hopeful if they also reported that they had received more prognostic information," Dr. Mack said.

The 112 parents of children for whom physicians reported more than 75% chance of a cure gained significant communication-related hope from each additional element of disclosure in the conversation (such as written rather than oral information). The odds ratio was 1.96 (95% confidence interval 1.34 to 2.86, P=0.0004).

The effect was in the same direction but not significant for the 57 parents whose children's physicians reported a 25% to 74% chance of cure (OR 1.32, 95% CI 0.86 to 2.03, P=0.21).

Dr. Mack said her group expected that additional information might not provide hope when the prognosis was poor.

In fact, they found that more extensive disclosure was most associated with hope when a child had less than a 25% chance of a cure.

For each individual aspect of prognostic information provided to these parents, the odds that they would derive hope from the conversation rose nearly six-fold (OR 5.98, 95% CI 1.14 to 31.46, P=0.03).

In a multivariate analysis, the impact of prognosis communication on hope were:

  • Additional degrees of disclosure (OR 1.67 per degree, 95% CI 1.14 to 2.45, P=0.009).
  • Parent-reported "high quality communication" (OR 5.39, 95% CI 2.56 to 11.33, P<0.0001).
  • Worsening prognosis conveyed by the physician (OR 0.67 per category, 95% CI 0.51 to 0.89, P=0.006).

So while hearing the bad prognosis may have discouraged parents, better communication related to it bolstered their hope.

The investigators acknowledged that the study may have been limited by the up to one-year delay between the survey and diagnosis, its reliance on parents' recall of conversations, and limited ethnic and cultural diversity among the patient population.

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