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

Abstract

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.

The Future of Adult Congenital Heart Disease Research: Precision Health Services Delivery for the Next Decade

“…In particular, where patients appear stable and transfer is mandated by age 18, gaps in care are observed with > 50% of patients falling out of care from 12 to 18 years of age 42 and only 47% having at least 1 followup in an ACHD centre before age 22, with substantially worst transfer rates in the US. 59,60 Moreover, we have shown that only 20%-25% of ACHD patients receive follow-up care in ACHD centres in accordance with guideline recommendations. 57,61 Beyond considerations of ACHD expert centres' care needs, for the majority of an ACHD patient's life, the burden of health care management is largely carried by the patient and their family.…”

Überraschende Echobefunde als Erstdiagnose eines angeborenen Herzfehlers im Erwachsenenalter

“…Im klinischen Alltag kommt es regelmäßig vor, dass sich Patienten in kardiologischen Praxen und Kliniken vorstellen, deren AHF bereits im Kindesalter diagnostiziert wurde, jedoch zu dieser Zeit keiner weiteren Therapie bedurfte. Aufgrund einer Versor-gungslücke ("lost to follow-up") befanden sich diese Patienten dann nicht selten über viele Jahre oder Jahrzehnte in keiner strukturierten und regelmäßigen Nachsorge und präsentieren sich mit relevanten Rest-und Folgeproblemen oder einer Leistungseinschränkung, was mit einer erhöhten Morbidität und Letalität einhergehen kann [2,8,9]. Demgegenüber gibt es auch Patienten, bei denen ein AHF erstmals im Erwachsenenalter diagnostiziert wurde.…”

The Year in Review: Anesthesia for Congenital Heart Disease 2019

“…However, remaining in care is associated with improved long-term outcomes. 54 Anesthesiologists who encounter these patients should refer them back into ACHD specialty care.…”