Impact of a Structured Transition Education Program on Knowledge and Transition Readiness Among Adolescents With Congenital Heart Disease: A Single-Center Quality Improvement Study

Technical Summary: Impact of a Structured Transition Education Program on Knowledge and Transition Readiness Among Adolescents With Congenital Heart Disease

Problem Statement
As survival rates for congenital heart disease (CHD) improve, with over 85% of affected children surviving into adulthood, the transition from pediatric to adult care has become a critical clinical challenge. Health care transition is defined as the process of gaining independence in managing one's own medical care, distinct from the physical transfer to an adult provider. Despite 2025 ACC/AHA/HRS/ISACHD/SCAI guidelines recommending structured, patient-centered transition education, implementation remains inconsistent. Current data indicates a pooled discontinuity rate of 26.1% in cardiology care during transition, with fewer than 30% of adults with complex CHD enrolled in specialized Adult Congenital Heart Disease (ACHD) programs. Furthermore, existing literature highlights significant knowledge deficits among adolescents regarding medical topics, lifestyle, and specifically reproductive health (53% deficit), suggesting that recommended transition education is not widely available.

Methodology
This study is a single-center, pre-post quality improvement (QI) initiative conducted at the Pediatric Cardiology clinic of the University of Miami/Jackson Memorial Hospital. The study enrolled 53 adolescents (aged 12–18 years) with CHD between February 2025 and April 2026. Participants with severe developmental delays or a history of heart transplantation were excluded.

The intervention followed a three-part structure during routine clinic visits:

1. Baseline Assessment: Participants completed a 22-item transition-readiness survey adapted from the validated STARx and TRxANSITION instruments. The survey covered five domains: CHD knowledge, medication management, healthcare navigation, reproductive health, and psychosocial misconceptions.
2. Structured Education: A physician-led, individualized educational session (approx. 30 minutes) was conducted by a cardiologist and the principal investigator. The session utilized a standardized checklist and a personalized "cardiac passport" to cover diagnosis, surgical history, medication management, infective endocarditis prophylaxis, symptom recognition, exercise, diet, reproductive health, insurance navigation, and psychosocial resources.
3. Post-Intervention Assessment: Participants repeated the 22-item survey immediately following the education session.

Statistical analysis employed McNemar's test for paired binary proportions to compare pre- and post-education correct responses. Subgroup analyses compared younger (12–14) and older (15–18) age groups using the Mann-Whitney U test. Additionally, a baseline survey of 14 pediatric cardiology providers assessed current counseling practices.

Key Contributions
The study contributes a practical, clinic-based QI model for integrating structured transition education into routine pediatric cardiology workflows without requiring extensive additional resources. Key methodological contributions include:

• Adaptation of Instruments: The modification of generic transition readiness tools (STARx and TRxANSITION) to specifically address CHD-relevant domains such as congenital cardiac anatomy, prior interventions, and infective endocarditis prophylaxis.
• Provider-Patient Alignment: The study uniquely correlates provider self-reported counseling gaps with patient knowledge deficits and expressed educational interests, demonstrating a clear misalignment in routine care.
• Tool Development: The implementation of a personalized cardiac passport as a tangible educational aid to summarize medical history.

Results

• Participant Demographics: The cohort included 53 participants (median age 15; 51% male), with 67.9% having complex CHD.
• Provider Practices: While all providers addressed disease-specific topics and medication adherence, transition-specific topics were inconsistently covered. Only 2 of 14 providers routinely discussed reproductive health or health insurance planning.
• Knowledge Gains: Significant improvements were observed in 19 of the 22 survey items (all p < 0.05).
  • CHD Knowledge: Median correct responses rose from 39.6% to 95.9% (+56.3 percentage points).
  • Medication Management: Improved from 46.9% to 81.3% (+34.4 points).
  • Healthcare Navigation: Improved from 55.8% to 90.6% (+34.8 points).
  • Reproductive Health: Showed the largest gain, increasing from 18.4% to 91.9% (+73.5 points).
• Subgroup Analysis: Post-intervention performance was statistically comparable between younger and older adolescents across four of five domains, indicating the intervention's effectiveness across the 12–18 age spectrum.
• Non-Significant Items: The three items that did not show significant improvement had high baseline correct-response rates (e.g., 95.9% knew if they had prior surgery; 98.1% rejected misconceptions about college/employment).

Significance and Claims
The authors claim that a structured transition education intervention is associated with substantial, immediate improvements in disease knowledge, self-management skills, healthcare navigation, and reproductive health awareness among adolescents with CHD. The study posits that these knowledge deficits are readily addressable through structured, individualized education delivered during routine visits.

The paper asserts that the findings support the integration of standardized transition education into routine pediatric cardiology practice. It highlights that the largest improvements occurred in domains (insurance, reproductive health) that are frequently omitted in routine care but are highly valued by patients and critical for preventing care discontinuity. The authors conclude that such programs are feasible and effective, though they acknowledge limitations including the lack of a control group, the immediate nature of the post-test (limiting conclusions on long-term retention), and the single-center design. The study does not claim that knowledge gains automatically translate to behavioral change or successful transfer to adult care, noting that future work is required to evaluate long-term outcomes.