Lost in the system? Transfer to adult congenital heart disease care-Challenges and solutions. Congenit Heart Dis 2019 Jul;14(4):541-548
Date
05/09/2019Pubmed ID
31066199Pubmed Central ID
PMC6697598DOI
10.1111/chd.12780Scopus ID
2-s2.0-85065497865 (requires institutional sign-in at Scopus site) 18 CitationsAbstract
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.
Author List
Gerardin J, Raskind-Hood C, Rodriguez FH 3rd, Hoffman T, Kalogeropoulos A, Hogue C, Book WAuthor
Jennifer Gerardin MD Assistant Professor in the Pediatrics department at Medical College of WisconsinMESH terms used to index this publication - Major topics in bold
AdolescentAdult
Age Factors
Female
Follow-Up Studies
Georgia
Health Knowledge, Attitudes, Practice
Heart Defects, Congenital
Humans
Male
Morbidity
Retrospective Studies
Time Factors
Transition to Adult Care
Young Adult
