Abstract 16972: Introducing Advance Care Planning Into the Transition Process: The ACHD Patient Perspective

Introduction: The goal of the transition process from pediatric to adult care for congenital heart disease (CHD) patients, in additional to uninterrupted care, is to educate adolescents and young adults (AYAs) about their health and encourage them to develop strong self-care, decision-making, and communication skills. Adults are expected to voice their own values, opinions, and healthcare goals, especially when it comes to end-of-life (EOL) care, and, thus, it has been suggested to introduce advance care planning (ACP) into the transition process. To help inform timing of first ACP, we asked ACHD patients to share their opinions. Methods: Patients seen in the outpatient ACHD clinic from April-May 2018 completed a survey assessing their ACP preferences. Disease severity was recorded as simple, moderate, or complex. Health literacy was assessed with The Newest Vital Sign tool. Mann-Whitney U and Fisher’s exact tests were used to evaluate associations between demographics, health literacy, disease complexity, perceived health status and ACP preferences. Results: Forty-five patients (median age 37.6y, range 19.8-71.9y; 58% female; 67% Caucasian) were included. Disease complexity was moderate in 51% and severe in 39%, and 82% enrollees considered themselves in good health. Most (76%) thought ACP was moderately or extremely important. Regarding timing of ACP, 76% thought ACP should be discussed before getting sick, while healthy or when first diagnosed with a life-threatening illness . Participants reported that in late adolescence (16+) or early adulthood, AYAs with CHD are capable of knowing their EOL care wishes (68%), and ACP discussions should be introduced (76%). While higher income was associated with ACP importance, no demographic or disease complexity associations were found for ACP preferences. Conclusions: Adults with ACHD report that ACP is of high importance and should be discussed early in the disease course; however, they believe that it is not until late adolescence or early adulthood that AYAs are truly capable of knowing what kind of EOL care they want, and that ACP discussions should be initiated at this age. This valuable insight informs provider understanding of when ACP conversations can appropriately be initiated.