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Lost in the system? Transfer to adult congenital heart disease care-Challenges and solutions
Jennifer Gerardin1, Cheryl Raskind-Hood2, Fred H Rodriguez3,4
1Division of Cardiology, Department of Pediatrics, Medical College of Wisconsin, Wauwatosa, Wisconsin.
Insights
Most congenital heart disease patients do not transfer to adult care, with severe cases more likely to transition. Distance to the referral center is a key barrier to successful transfer for these complex cardiac conditions.
Area of Science:
- Cardiology
- Pediatric Cardiology
- Adult Congenital Heart Disease
Background:
- Transferring care for congenital heart disease (CHD) from pediatric to adult settings is crucial for improved patient outcomes.
- Effective transition ensures continuity of specialized care for a growing adult CHD population.
Purpose of the Study:
- To determine the percentage of congenital heart disease patients who successfully transfer to adult congenital cardiac care.
- To identify factors influencing the transfer process, including disease severity and healthcare system logistics.
Main Methods:
- Retrospective cohort study analyzing 1514 patients (age 16-30) across three Georgia healthcare systems (2008-2010).
- Examined factors like distance to referral center, age, transfer timing, gender, CHD severity, and comorbidities.
- Assessed initial pediatric care and subsequent transfer to adult congenital cardiology specialists (2008-2015).
Main Results:
- 24% of patients were over the recommended transfer age (21 years).
- Only 12.1% of patients transferred to the affiliated adult hospital; 90% saw an adult congenital cardiologist.
- Severe CHD patients were more likely to transfer (18.7%) than non-severe (6.2%); distance was a barrier.
Conclusions:
- Patients with severe congenital heart disease are more likely to transfer to adult care.
- A significant majority of CHD patients do not transition to adult congenital cardiology care.
- Addressing barriers, particularly geographic distance, is essential for improving transfer rates and patient outcomes.
Objective:
Transfer of congenital heart disease care from the pediatric to adult setting 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 patients from its pediatric referral base.
Patients:
This resulted in 1514 patients age 16-30, seen at least once in three pediatric 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 between 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 congenital 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 understand and address barriers in order to improve successful transfer.
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