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 child's 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 child's 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.

Keywords: communication; congenital heart disease; heart failure; pediatrics; prognosis; quality of life.

Figure 1. Parent and physician perception of parental prognostic understanding based on responses to: Parent: “How well do you feel that you understand the likely course of your child's heart disease (ie, prognosis)?”; Physician: “How well do you think this patient's family understands their child's prognosis?”.

Although 92% of parents reported that they understood their child's prognosis “extremely well” or “well,” 28% of physicians thought that parents understood the prognosis only “a little” or “somewhat.” No physicians selected “Not at all.”

Figure 2. Percentage agreement between individual parent–provider pairs across survey domains.

For questions that were administered as a 5‐point Likert Scale, percentage agreement was analyzed using a collapsed 3‐point Likert scale. Functional class was analyzed in its original 4‐point form. Parents and physicians demonstrated the most concordance with respect to parental understanding of prognosis and likelihood of need for cardiac interventions. The most limited agreement was observed with perception of functional class and likelihood of limitations in learning/behavior.

Figure 3. Parent and physician assessment of likelihood of limitations in physical activity and learning/behavior and likelihood of need for future cardiac interventions.

The y‐axis is the percentages of physicians who selected “very likely” that the child would have limitations in physical activity and learning/behavior and “very likely” to need future interventions. Within each column is the percentage of parents of those patients who responded, “very likely,” “somewhat likely,” and “not at all likely” to the same questions. Compared with parents, physicians were more likely to expect limitations in physical activity and learning/behavior and more likely to expect that future interventions would be necessary.

Figure 4. Parent and provider unpaired responses to the question “What is your current understanding of how long your child/this patient will live?”.

Many parents (47%) but few physicians (6%) expected their child/patient to have a normal life expectancy.