Disclosures: The authors report no relevant financial disclosures.
January 23, 2021
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Better parent-physician communication needed for children with heart disease

Disclosures: The authors report no relevant financial disclosures.
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There are gaps between physicians and parents in knowledge of disease status and prognosis in children with advanced heart disease, according to study data published in the Journal of the American Heart Association.

Therefore, better communication between physicians and parents is needed, the researchers wrote.

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“Significant medical and surgical advances have resulted in a growing population of children surviving longer with advanced heart disease. Despite these improvements, the morbidity for this population remains high, and these children may face major neurodevelopmental challenges that affect quality of life,” Emily Morell, MD, pediatric cardiology fellow at Children’s Hospital Los Angeles, and colleagues wrote. “Studies to evaluate parent understanding of prognosis for children with advanced heart disease have been limited. However, prognostic awareness has been found to critically inform parental decision-making in the pediatric oncology population.”

In a longitudinal study evaluating parent and physician understanding of advanced heart disease burden, researchers surveyed 160 pairs of parents and physicians of patients (median age, 1 year; 39% with single-ventricle lesions; 37% in the cardiac ICU) hospitalized with an advanced heart disease diagnosis.

Study results showed that 92% of parents reported they understood the prognosis, but 28% of physicians reported parents understood “a little,” “somewhat” or “not at all.” Further analysis revealed better parent-reported prognosis understanding was associated with a greater preparedness (OR = 4.7; 95% CI, 1.4-21.7; P = .02). Researchers noted that parents were more likely to anticipate normal life expectancies for their children with advanced heart disease than physicians (47% vs. 6%), and there was poor parent-physician agreement in assessing disease burden.

“The relationship between a physician and a child with chronic illness is especially intense, which sometimes makes realistic prognosis conversations difficult to initiate,” Elizabeth D. Blume, MD, medical director of advanced cardiac therapies at Boston Children’s Hospital and associate professor of medicine at Harvard Medical School, told Healio. “Continued research will identify interventions to help train and support physicians caring for families with pediatric heart disease.”

For more information:

Elizabeth D. Blume, MD, can be reached at betsy.blume@cardio.chboston.org.