TY - EJOU
AU - Gerardin, Jennifer
AU - Raskind‐Hood, Cheryl
AU - Rodriguez, Fred H.
AU - Hoffman, Trenton
AU - Kalogeropoulos, Andreas
AU - Hogue, Carol
AU - Book, Wendy
TI - Lost in the system? Transfer to adult congenital heart disease care—Challenges and solutions
T2 - Congenital Heart Disease
PY - 2019
VL - 14
IS - 4
SN - 1747-0803
AB - Objective: Transfer of congenital heart disease care from the pediatric to adult set‐
ting has been identified as a priority and is associated with better outcomes. Our
objective is to determine what percentage of patients with congenital heart disease
transferred to adult congenital cardiac care.
Design: A retrospective cohort study.
Setting: Referrals to a tertiary referral center for adult congenital heart disease pa‐
tients from its pediatric referral base.
Patients: This resulted in 1514 patients age 16‐30, seen at least once in three pediat‐
ric Georgia health care systems during 2008‐2010.
Interventions: We analyzed for protective factors associated with age‐appropriate
care, including distance from referral center, age, timing of transfer, gender, severity
of adult congenital heart disease, and comorbidities.
Outcome Measures: We analyzed initial care by age among patients under pediatric
care from 2008 to 2010 and if patients under pediatric care subsequently transferred
to an adult congenital cardiologist in this separate pediatric and adult health system
during 2008‐2015.
Results: Among 1514 initial patients (39% severe complexity), 24% were beyond the
recommended transfer age of 21 years. Overall, only 12.1% transferred care to the
referral affiliated adult hospital. 90% of these adults that successfully transferred
were seen by an adult congenital cardiologist, with an average of 33.9 months be‐
tween last pediatric visit and first adult visit. Distance to referral center contributed
to delayed transfer to adult care. Those with severe congenital heart disease were
more likely to transfer (18.7% vs 6.2% for not severe).
Conclusion: Patients with severe disease are more likely to transfer to adult congeni‐
tal heart disease care than nonsevere disease. Most congenital heart disease patients
do not transfer to adult congenital cardiology care with distance to referral center
being a contributing factor. Both pediatric and adult care providers need to under‐
stand and address barriers in order to improve successful transfer.
KW - adult congenital heart disease
KW - transfer of care
KW - transition
DO - 10.1111/chd.12780