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

Abstract

BackgroundThe 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.ObjectivesThis 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).MethodsThis 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.ResultsA 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).DiscussionThe 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.

Referral Order Placement Decreases Time to Transfer to Adult Congenital Heart Disease Care

“…Distance to the referral center has shown to either have no effect on transfer outcomes [13,16,17,21] or to negatively impact transfer outcomes [15,23,29]. In this study, living inside the metro area seemed to shorten the time to transfer to the accredited ACHD center, but not when other variables were adjusted for in the model.…”

“…Transfer rates of pediatric CHD patients to accredited ACHD centers are reported to be higher in countries with larger specialized CHD programs, closer location and a liation between pediatric CHD and ACHD services, and programs with structured transfer processes [12]. In the US, between 11-39% of pediatric CHD patients transfer to ACHD centers [13][14][15][16][17][18][19][20], which is considerably lower than transfer rates in Europe [21,22] and Canada [23]. In the US, structured transfer processes to accredited ACHD centers are less commonly used than in Europe [24,25].…”

Strategies to Aid Successful Transition of Adolescents with Congenital Heart Disease: A Systematic Review

“…The lowest prevalence (3.6%) was that found by Mondal TK and Coll in a single university centre study offering paediatric and ACHD clinics in the same site. This is probably the explanation for such an astonishing difference in loss to follow-up [ 40 ].…”

Qualitative study of facilitators and barriers for continued follow-up care as perceived and experienced by young people with congenital heart disease in Sweden

“…[1][2][3][4][5] However, despite the recommendation that the vast majority of CHD patients receive continued follow-up care, 1 3 high rates of discontinuation of care among young people with CHD are being reported. [6][7][8][9][10][11][12][13][14][15][16][17][18][19][20][21][22][23] In this paper, the term discontinuation of care is used as an overarching term for describing 'a disrupted chain of follow-up care'. Terms and definitions in this area differs greatly and often included aspects such as inappropriate time intervals, care levels or complete disruption of follow-up care.…”