Parent and physician understanding of prognosis in hospitalized children with advanced heart disease

Abstract

BACKGROUND: The unpredictable trajectory of pediatric advanced heart disease makes prognostication difficult for physicians and informed decision-making challenging for families. This study evaluated parent and physician understanding of disease burden and prognosis in hospitalized children with advanced heart disease. METHODS AND RESULTS: A longitudinal survey study of parents and physicians caring for patients with advanced heart disease age 30 days to 19 years admitted for >7 days was performed over a 1-year period (n=160 pairs). Percentage agreement and weighted kappa statistics were used to assess agreement. Median patient age was 1 year (interquartile range, 1-5), 39% had single-ventricle lesions, and 37% were in the cardiac intensive care unit. Although 92% of parents reported understanding their childs prognosis extremely well or well, 28% of physicians thought parents understood the prognosis only a little, somewhat, or not at all. Better parent-reported prognostic understanding was associated with greater preparedness for their childs medical problems (odds ratio, 4.7; 95% CI, 1.4-21.7, P=0.02). There was poor parent-physician agreement in assessing functional class, symptom burden, and likelihood of limitations in physical activity and learning/behavior; on average, parents were more optimistic. Many parents (47%) but few physicians (6%) expected the child to have normal life expectancy. CONCLUSIONS: Parents and physicians caring for children with advanced heart disease differed in their perspectives regarding prognosis and disease burden. Physicians tended to underestimate the degree of parent-reported symptom burden. Parents were less likely to expect limitations in physical activity, learning/behavior, and life expectancy. Combined interventions involving patient-reported outcomes, parent education, and physician communication tools may be beneficial.