HealthDay News — Most adolescents and young adults (AYA) with advanced heart disease desire an active role in medical decision-making, according to a study published online May 5 in JAMA Network Open.
Melissa K. Cousino, Ph.D., from Michigan Medicine in Ann Arbor, and colleagues characterized decision-making preferences of AYAs (aged 12 to 24 years) with advanced heart disease (listed for heart transplantation or posttransplant with life-limiting complications) and their parents. The analysis included 53 AYA-parent dyads (July 2018 to April 2021).
The researchers found that the plurality of AYA participants (45.3 percent) indicated a preference for active, patient-led decision-making specific to heart disease management, while the greatest proportion of parents (35.3 percent) preferred they and physician(s) make shared medical decisions on behalf of their AYA (AYA-parent decision-making discordance). Most AYA participants wanted to discuss adverse effects or risks of treatment (86.8 percent), procedural and/or surgical details (84.9 percent), impact of condition on daily activities (90.6 percent), and their prognosis (79.2 percent). If very ill, more than half of AYAs preferred to be involved in end-of-life decisions (56.6 percent). A preference for more active, patient-led decision-making was associated with longer time since cardiac diagnosis and worse functional status.
“Interventions and educational efforts targeting clinicians, [adolescents and young adults] with heart disease, and their caregivers are needed to ensure they are meeting the decision-making and communication preferences of this patient population with complex disease and treatment courses,” the authors write.