Advance Care Planning for Adults With Moderate-to-Severe Congenital Heart Disease: Readiness Trial

Abstract

Background

Adults with congenital heart disease (CHD) are growing in number and living longer with complex lesions; however, many are at risk of death in midlife. Conversations about advance care planning (ACP) in this population have been found to be infrequent and not part of regular outpatient care. The intent of this study was to explore readiness of patients with adult CHD (ACHD) to discuss ACP and assess the impact of interventions to support ACP conversations.

Methods

We conducted a prospective, randomized, single-centre trial of adults with moderate to severe CHD. Simply, the control group was asked if they were ready to discuss their wishes if they were to become seriously ill. The intervention group was provided 2 additional resources with the readiness question, the modified Lyon Family-Centered ACP survey and a patient-partner created ACHD-ACP video.

Results

A total of 111 responses (control [n = 59] and intervention group [n = 52]) were collected for analysis. Women represented 59.0% of the participants. The mean age was 39.6 years (standard deviation = 14.8 years). No significant difference was found between the control and experimental groups’ readiness (94.9% and 90.4%, respectively). Most participants (92.8%) responded positively towards initiating conversations related to end-of-life and ACP discussions.

Conclusions

We found that adults with CHD are ready to have ACP conversations as part of their outpatient care. Patient preferences and values should guide ACP conversations; further research is needed to determine whether the modified Lyon Family-Centered ACP survey and ACHD-ACP video are helpful adjuncts for ACP in outpatient clinics.