Open Access

ARTICLE

Lost in the system? Transfer to adult congenital heart disease care—Challenges and solutions

Jennifer Gerardin¹, Cheryl Raskind‐Hood², Fred H. Rodriguez^3,4, Trenton Hoffman², Andreas Kalogeropoulos⁵, Carol Hogue², Wendy Book³

1 Division of Cardiology, Department of Pediatrics, Medical College of Wisconsin, Wauwatosa, Wisconsin
2 Department of Epidemiology, Rollins School of Public Health, Emory University, Atlanta, Georgia
3 Division of Cardiology, Department of Medicine, Emory University School of Medicine, Atlanta, Georgia
4 Sibley Heart Center, Atlanta, Georgia
5 Department of Medicine, Stony Brook University, Stony Brook, New York

* Corresponding Author: Jennifer Gerardin, Division of Cardiology, Department of Pediatrics, Medical College of Wisconsin, 8915 W. Connell Ct. PO Box 1997, Milwaukee, WI 53226. Email:

Congenital Heart Disease 2019, 14(4), 541-548. https://doi.org/10.1111/chd.12780

Abstract

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.

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