Abstract 13785: Prognostic Awareness of Parents snd Physicians in Hospitalized Children With Advanced Heart Disease

IntroductionAlthough survival in pediatric heart disease has improved dramatically, long term morbidity and mortality remain high. Prognostic awareness is the understanding of disease trajectory and enables informed decision-making. This study evaluated concordance between parent and physician (MD) understanding of prognosis in hospitalized children with advanced heart disease (AHD).MethodsProspective cohort survey of parents and MDs caring for patients 30 days, ECMO, ventilator > 14 days, or ≥3 admissions/year. Parent/MD pairs (n=157) independently completed surveys. The Kappa statistic was used to assess agreement.ResultsThe majority had congenital heart disease (93%), with a median age of 1 yr (range 1m-19 yrs) and a median LOS at enrollment of 13 days (range 7 - 91); 37% (n=59) were in the cardiac intensive care unit. The 50 MDs were primarily cardiologists (58%), but also included cardiac intensivists, cardiac surgeons, and fellows. Parents were mostly mothers (81%), married (74%), and Caucasian (72%). While 92% of parents reported that they understood their child’s prognosis extremely well/well, 28% of MDs thought that parents understood the prognosis only a little/somewhat. Parent-MD pairs were concordant with respect to likelihood of lifelong interventions (78% agreement, kappa 0.7) but showed poor agreement with respect to limitations in physical activity and learning. Many parents (45%) but few MDs (4%) expected their child/patient to have a normal life expectancy. MDs predicted survival of no more than several years for 39 subjects; for 22 (56%) of these, the parents expected a normal life span and/or survival into adulthood.ConclusionsAlthough there is high concordance between parents and MDs on need for future intervention in AHD patients, discrepancies exist in understanding of life expectancy and likelihood of physical and cognitive limitation. Parents are less likely to expect limitations in quality of life, cognition, and life expectancy. Combined interventions involving parent education and physician communication tools may be beneficial.