Design and Implementation of My Health, My Heart: A Pilot Healthcare Transition Program for Adolescents with Congenital Heart Disease

Effective healthcare transition for congenital heart disease (CHD) patients to adult-centered care remains a significant challenge. Virtual, family-centered transition programs incorporating individualized goal setting may improve readiness. My Health, My Heart is a 12-month virtual, family centric transition program for patients (12-22 years) with CHD. It includes a social work assessment, individualized goal setting, and sessions focused on medical knowledge, care coordination, and mental health. Validated assessments (transition readiness, health knowledge, PedsQL 4.0, PROMIS anxiety and depression, and parental PSS) were delivered at baseline and completion. Primary outcome was feasibility (enrollment, retention, and barriers); secondary outcomes included changes in transition readiness, medical knowledge, and quality of life. A total of 68 participants (median age 16[13.75-18], 38% F] enrolled, with 41 (60%, median age 16[13-18], 39% F) patients completing both goals. Attrition was highest (37%) from completion of initial surveys to the first goal. Participants reported improvements in confidence managing heart health (median score 6.5[4.25-8] to 8[6-9]) and transition readiness (median score 5[4-8] to 7[5-9]). Quality-of-life scores increased significantly (PedsQL total: 79.4 ± 15.3 → 84.4 ± 15.7, p = 0.006). Among completers, 80% of participants and 90% of caregivers reported being very or extremely satisfied. Qualitative feedback identified ongoing needs in mental health support, practical life skills, and peer connection. The My Health, My Heart telemedicine transition program is feasible and suggests early improvements in quality of life and transition readiness, underscoring the importance of individualized support and caregiver engagement.