Parents’ experiences with prognosis communication in advanced pediatric cancers

Abstract

Prognostic information in advanced cancers is distressing. We surveyed 30 parents of children with advanced cancer from a tertiary cancer center in India to understand parental preferences for prognostic information. We found that 17/20 (85%) parents desired as much information about prognosis as possible and wanted it expressed numerically. All parents found information about the prognosis to be upsetting but still wanted additional information about the prognosis, except, 2/20 (10%). Parents who found information ‘somewhat’ or ‘extremely’ upsetting 8/20 (40%) were no less likely to say that knowing prognosis was important, or that it helped in decision-making. Thus, although many parents find prognostic information about their children with cancer upsetting, parents who are upset by prognostic information are no less likely to want it. The upsetting nature of prognostic information does not diminish parents’ desire for such information or their sense of hope.