The American College of Cardiology 2008 Guidelines for the Management of Adults with Congenital Heart Disease (ACHD) recommends that care of adults with moderate/complex congenital heart disease (CHD) be guided by clinicians trained in ACHD. Despite these recommendations, the number of adults receiving such care is far less than projected estimates. Understanding referral patterns and barriers to ACHD care as perceived by pediatric cardiologists (PCs) are essential for the development of optimal ACHD care programming.

A cross-sectional survey was distributed to randomly selected U.S. PCs.

The overall response rate was 48% (291/610) and 88% (257/291) met inclusion criteria (outpatient care to pts >11 yrs of age). Participants were in practice for 18.2±10.7 yrs, 70% were male, and 71% reported an academic institution affiliation. The majority of PCs (79%) provided care to adult pts (>18 yrs). The most commonly perceived patient characteristics to prompt referral to ACHD care were adult co-morbidities (83%), age (64%), and pregnancy (64%). The most commonly perceived barrier to ACHD care was emotional attachment from parents and patients to the PC (87%, 86% respectively). Clinician attachment to the patient/family was indicated as a barrier by 70% of PCs; this was more commonly noted by affiliates of academic institutions (p<0.001). A lack of qualified ACHD care providers was noted by 76.3% of PCs. Those practicing in the Northeast were less likely to identify this as a barrier compared to PCs from other US regions (p=0.012).

The majority of PCs in the U.S. appear to be providing care to ACHD pts. Adult co-morbidities were noted as a common characteristic to prompt referral to ACHD care; lack of trained ACHD providers was perceived as a common barrier. Even when ACHD specialists were available, emotional attachment of patient, parent and PC was perceived to be a significant barrier. Strategies for ACHD program development should encourage referral before the onset of adult co-morbidities to ensure a time of clinical stability and should address the emotional needs of patients, families and PCs during the transition and transfer process.