The Creation Of Stakeholder-Based Clinical And Mobile Based Programs To Assist In Transition And Transfer To Adult Care For A Diverse Group Of Congenital Heart Disease Adolescents

Purpose: Congenital heart diseases (CHDs) are the most common type of birth defects. Improvements in CHD care have led to roughly 1.4 million survivors reaching adulthood. Unfortunately, <30% of adults with CHD are seen by adult CHD physicians, and few formal CHD transition-to-adult programs exist. The objective of this project was to first complete a stakeholder needs assessment to inform the knowledge gaps, transition readiness, and delivery of transition education for a diverse group of adolescents with CHD. Second, to develop the workflow, educational content, and electronic medical record (EMR) components for a clinical and mobile-based education with the assistance of an adolescent CHD expert panel.