Abstract Body (Do not enter title and authors here): Background: Despite increased survival rates for children with congenital heart disease (CHD), they still face high morbidity, mortality, and complex medical decision-making, particularly when living with advanced disease, such as heart failure. There are identified gaps in meeting the communication and medical decision-making needs of these young patients. Additionally, clinicians report many barriers and lack of training specific to communication about difficult topics, such as prognostication and advance care planning, with their young patients. Patient-centered communication tools are needed to address these gaps.
Research Question: This single-center pilot study evaluated the feasibility and acceptability of the WE CHATT communication tool which was designed via mixed-methods research with adolescents/young adults (AYA; ages 12-24) with advanced heart disease and their caregivers. The 2-page tool facilitates discussions on medical communication preferences, medical decision-making preferences, and support needs between clinicians, AYAs, and caregivers.
Methods: Participants included twenty pediatric cardiologists (N=13) / fellows (N=7) randomized to the intervention (N=10) or control (N=10) arms. The intervention included a 1-hour training and WE CHATT tool usage in an AYA new patient encounter. Physicians completed baseline and post-intervention surveys assessing comfort and barriers specific to AYA communication and medical decision making. The comfort scale ranged from 15-75 with higher scores indicating greater comfort. Feedback on the WE CHATT tool in practice was also gathered from AYAs (N=10) and caregivers (N=9) via surveys, including a 0-10 (10=highest) satisfaction scale.
Results: Baseline comfort in discussing difficult topics with AYAs was M=52.1 (SD=14.2) in the control arm and M=54.1 (SD=9.3) in the intervention arm. Post-intervention, comfort increased to M=58.4 (SD=9.0) in the intervention arm, with a Cohen’s d small-medium effect size of 0.33. The median time spent using the WE CHATT tool was 15 minutes (IQR 15-25). Satisfaction scores were high, with median ratings of 9 from physicians, and 9 and 10 from AYAs and caregivers, respectively.
Conclusion: Pediatric cardiologists face challenges in communicating with AYAs about their advanced heart disease. WE CHATT is a feasible, well-received tool that enhances physician comfort in engaging with young patients, effectively aligning with the communication needs of AYAs and their caregivers.