Medical Decision Making among Adolescents and Young Adults with Heart Failure

Abstract

Purpose In pediatric chronic illness groups, adolescent and young adult (AYA) medical decision making (DM) involvement is associated with important physical and psychosocial outcomes. Despite high morbidity, mortality, and treatment burden in AYAs with heart failure, their DM preferences and level of involvement are largely unknown. This study aimed to: 1) describe AYA DM preferences, 2) determine the degree of AYA DM involvement related to heart disease management, and 3) examine patient and disease characteristics associated with DM involvement. Methods AYAs (12-24 years) with heart failure or a significant post-heart transplant complication and a parent were enrolled at a single center. AYA/parent dyads completed a validated DM preferences item and Decision Making Involvement Scale. Standard descriptive statistics were reported and univariate comparisons were conducted. Results 46 patients and 44 parents participated. Patients were 63% male; 76% White. Dilated cardiomyopathy (28%), chemotherapy-related cardiomyopathy (24%), and single ventricle heart disease (17%) were the most common diagnoses. Disease burden was high with 59% having ≥6 hospitalizations, 50% having ≥3 cardiac surgeries, and 39% having extra-cardiac disease. Nearly half (48%) of AYAs reported a preference for active, patient-led DM; 24% desired shared DM with parent/medical team. Conversely, 36% of parents felt that they and the medical team should make decisions together without child involvement with a smaller group preferring shared DM with their child (25%) or patient-led DM (11%). AYA-parent dyads were highly discordant in DM preferences (P=0.004). Parents perceived seeking their child's opinion more than AYA report of such behavior (P=0.01). Greater time since diagnosis (P=0.01) and higher NYHA class (P=0.02) were associated with AYA preference for more active, patient-led DM. Older AYA age (P=0.04), congenital heart disease diagnosis (P=0.03), and transplant history (P=0.04) were associated with greater involvement in a recent heart disease management decision. Conclusion Most AYAs with heart failure desire involvement in their medical DM, often to a degree greater than what their parent(s) perceives. Interventions to enhance AYA engagement in their own medical DM are needed, along with future study of the associations of AYA DM involvement with physical and psychosocial outcomes.