1. Three quarters of parents of children with a cancer diagnosis report greater optimism about their child’s prognosis than the child’s physician.
2. Parents who valued implicit prognostic information, such as a general sense of oncologist’s perception of child wellbeing, or spiritual information were significantly less accurate in estimating their child’s actual prognosis
Evidence Level: 2 (Good)
Study Rundown: Parents of pediatric cancer patients use multiple sources, with varying levels of veracity, to generate an understanding of their child’s prognosis. While some degree of optimism is beneficial, unreasonably optimistic beliefs can be detrimental to the patient and family experience. The accuracy of a parent’s understanding compared with that of their child’s physician depends on numerous factors, yet few studies have analyzed the impact of these individual sources on parent’s perception of their child’s prognosis. Researchers in this study used questionnaires to evaluate which sources of information parents valued the most and how reliance on different sources affected their prognostic accuracy. Sources analyzed included explicit medical conversations with providers, implicit senses of child wellbeing, social interactions with loved ones, spiritual encounters, and various forms of literature. Results showed that only about 25% of parents reported a prognostic estimate which matched that reported by the physician, with the majority of parents being more optimistic than providers. Parents rated implicit sources of prognostic information as slightly more informative than explicit conversations, yet those who valued explicit sources did not demonstrate greater prognostic accuracy. This study was limited to a fairly homogenous population in terms of parent ethnicity and education level, which may impact generalizability. Nonetheless, results demonstrate the need for providers to clearly convey prognostic information, both explicitly and implicitly, and to use other methods to ensure parents accurately understand their child’s prognosis.
In-depth [prospective cohort]: Investigators in this study examined questionnaire data from 256 parents of pediatric patients recently diagnosed with cancer at 2 large pediatric hospitals between 2008 and 2014. Survey questions addressed parents’ understanding of their child’s prognosis, as well as the sources of prognostic information utilized the most. Parents were also surveyed about their perceptions on trust in quality of communication with providers. Parental surveys were matched to prognostic questionnaires completed by each child’s physician. Accurate parental understanding of prognosis was defined as exact agreement with prognosis reported by the physician. Results showed 73% of parents were more optimistic about their child’s prognosis than the physician. Parents who valued implicit sources and spiritual sources were less accurate in predicting prognosis (OR 0.5, 95% CI 0.29-0.88 and OR 0.47, 95% CI 0.26-0.85 respectively). Specifically, parents whose prognostic understanding was largely based on a “general sense of how [their] child’s oncologist seems to feel [their] child is doing” were less accurate in their estimates (OR 0.47, 95% CI 0.22-0.99). Highly valuing implicit information was more common among parents who felt they received high-quality prognostic information (OR 3.02, 95% CI 1.41-6.43) High reliance on explicit sources was not found to be associated with higher accuracy (OR 0.71, 95% CI 0.40-1.27).
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