Transition of adolescents with congenital heart disease from pediatric to adult congenital cardiac care: lessons from a retrospective cohort study

Abstract Background The transfer from pediatric to adult care is a key milestone for adolescents living with chronic health conditions. Over the past few decades, pediatric cardiac care has witnessed outstanding advancements leading to a dramatic increase in the number of children with congenital heart disease (CHD) surviving into adulthood. Successful transfer from pediatric to adult congenital cardiac care is critical because many adults with CHD require regular long-term cardiac care for optimal health outcomes. Objectives This study aims to (1) determine the rate of successful transfer of adolescents with CHD from pediatric to adult congenital cardiac care at the McMaster University Medical Centre (MUMC), a tertiary care level centre, and (2) to explore available patient- and context-related factors associated with unsuccessful transfer. MUMC includes both the McMaster Children’s Hospital, which offers Pediatric Cardiology services, and Adult Outpatient Services, which offers the Adult Congenital Cardiac Clinic (ACCC). Methods This is a retrospective cohort study in which all patients eligible for transfer from pediatric to adult congenital cardiac care from January 2006 to December 2012 were identified from the McMaster Children’s Hospital database. Successful transfer was defined as attendance at the ACCC within 2 years of discharge from Pediatric Cardiology. Patient and context-related variables include gender, severity of the CHD diagnosis, years since pediatric follow-up, and distance from the patient’s home to MUMC. The relationship between patient- and context-related variables available at baseline and unsuccessful transfer was assessed by univariate analysis. Results A total of 279 patients were identified, of which, 269 patients (96.4%) were successfully transferred to adult congenital cardiac care. Out of the 10 patients (3.6%) who were lost to follow-up, 8 had mild, 1 had moderate, and 1 had severe CHD. Based on the point estimates expressed as odds ratio (OR), factors that are potentially associated with a higher risk for loss to follow-up were: male gender (OR 1.8, 95% CI 0.5–7.3) and travel distance greater than 200 km to MUMC (OR 7.7, 95% CI 0.7–81.5), while moderate and severe CHD could potentially be a protective factor against loss to follow up when compared to mild CHD (OR 0.2, 95% CI 0–1.1). Discussion The medical and administrative practices that may be contributing to the high transfer rate of 96.4% include early and developmentally appropriate discussions, engaging patients and their families in cardiac care, proximity of the pediatric and adult congenital cardiac clinics, and an information pamphlet regarding the transition process, amongst others. Learning from our retrospective study we now work with the patients identified as potential high risk for loss to follow-up to understand and eliminate barriers and to implement sustainable methods that will ensure a successful transition to adult health care for all patients with CHD.