Overview
The transition from pediatric to adult congenital heart care is one of the most vulnerable periods in a CHD patient's life. Without a structured transition, patients are at risk of being lost to follow-up, missing critical surveillance, and developing preventable complications. Our transition program ensures continuity, education, and empowerment as patients move into adult-centered care.
The Transition Gap
Studies show that up to 60% of adolescents with CHD experience gaps in care during the transition to adult services. These gaps can last years — even decades — during which residual lesions may progress silently. The transition gap is driven by a combination of systemic barriers (few ACHD-trained providers), patient factors (limited health literacy), and logistical challenges (insurance changes, geographic moves).
Structured Transition Planning
Effective transition begins at age 12–14 with education about the patient's own diagnosis, medications, and warning signs. By age 16–18, patients should be practicing independent appointment scheduling, pharmacy management, and insurance navigation. Our program uses a step-by-step readiness checklist and a portable health passport to track progress and ensure nothing is missed.
Health Literacy & Self-Advocacy
Many young adults with CHD cannot name their diagnosis, describe their surgical history, or list their medications. Our transition program directly addresses this gap with age-appropriate education materials, teach-back exercises, and guided practice in communicating with healthcare providers. The goal is a patient who can confidently self-advocate in any medical setting.
Finding the Right ACHD Provider
A successful transition ends with a warm handoff to a qualified ACHD specialist. We help families identify accredited ACHD centers, coordinate medical record transfers, and schedule the first adult appointment before the last pediatric visit ends. This warm-handoff model has been shown to dramatically reduce loss to follow-up.
Who Is This For?
- Adolescents aged 14–18 with congenital heart disease preparing for adult care
- Young adults aged 18–25 who have not yet established adult cardiology care
- Families navigating the transition from pediatric to adult CHD services
- Pediatric cardiologists seeking a transition partner for their patients