Abstract 15373: Transition to Adult Congenital Heart Disease Care for Young Adults with Repaired Transposition of the Great Arteries is Better in Canada versus the United States in a Large Cohort: a Multi-institutional Congenital Heart Surgeons' Society Study
Objectives: Improved survival after congenital heart disease (CHD) surgery has led to the need for successful transition to adult congenital heart disease (ACHD) care. We sought patterns and associated factors for transition to ACHD care of young adults with repaired TGA, focusing on the differences between Canadian (Cdn.) and U.S. residents; as the Cdn. system has universal single payer (USP) coverage and a well developed network of ACHD providers.
Methods: Survivors followed into adulthood from a 1985-1989 CHSS inception cohort of neonates with TGA completed a CHSS developed questionnaire on transition to ACHD care (n=217, age 21-26 years; 80% U.S., no difference in age by country, p=0.2). Details regarding current care, first ACHD care experience, psychosocial factors, and parental involvement were collected. Features related to demographics, TGA repair, subsequent procedures, previous adolescent CHQ-CF87 scores, country of residence and institution were explored for association with time related transition to ACHD care.
Results: Time-related transition to ACHD care was completed by 25% by age 20, and 60% by age 24, with Canada nearing 100%. Factors associated with transition were living in Canada (Figure) and one U.S. institution, while morphology and repair type were not. Specific aspects of care showed relationship with country of residence; the majority of Cdn. patients reported they were no longer receiving care from a pediatric cardiologist, and were transferred to ACHD care at a new location/with a new doctor by their pediatric hospital as part of routine follow up. Patterns of care differed by current patient age.
Conclusions: Healthcare factors may be facilitating the earlier and more complete transition to ACHD care in Canada. Specific evaluations of care systems and funding sources, including USP coverage, aimed to ensure that patients with rare diseases receive continuity of care across transition, including CHD, are needed.
- Adult congenital heart disease
- Congenital heart surgery
- Healthcare delivery systems
- Pediatric cardiology
- Transitions of care
- © 2011 by American Heart Association, Inc.