Self-Perception of Transition Readiness Amongst Pediatric Patients with Childhood Heart Disease

This study assesses self-report of transition readiness among adolescents and young adults (ages 12-25 years) with childhood and congenital heart disease (CHD), receiving care at Hasbro Children's Hospital, whose CHD diagnosis warranted transfer to adult cardiology care. Patients were mailed the American Academy of Pediatrics/American College of Physicians Transition Readiness for Youth Assessment survey. Confidence scores ranged between 0 (not) and 10 (very). Mann-Whitney U test was used to assess differences in scores between younger (12-17 years) and older (18-25 years) groups. 396 patients met inclusion criteria; 88 surveys were returned. Half of respondents were in the older group. While most respondents felt empowered to take charge of their own health and equally confident about moving to adult care, this did not always translate to actual knowledge. Younger patients had statistically significant lower knowledge scores in these metrics. Aspects of care with low scores include medication refills, communication with primary care team, and the lifelong need for cardiology follow up and health insurance. This discrepancy between self-report and actual knowledge highlights the need for more varied and age appropriate interventions to help patients navigate a complex healthcare system. A concrete approach to acquire the knowledge necessary to ensure successful transfer to adult cardiology care should be a focus.