Referral Patterns and Perceived Barriers to Adult Congenital Heart Disease Care: Results of a Survey of U.S. Pediatric Cardiologists

Study Questions:

What are the referral patterns and barriers to adult congenital heart disease (ACHD) care, as perceived by pediatric cardiologists?

Methods:

A cross-sectional survey was administered via mail to randomly selected pediatric cardiologists in the United States.

Results:

Of a total of 610 surveys, 291 (48%) were returned. Of the 291 respondents, 257 met inclusion criteria (providers of outpatient care to patients >11 years of age). Participants had been in practice for 18.2 ± 10.7 years, with 72% affiliated with an academic institution. A large majority of participants (79%) stated they provided cardiac care to adults. The most commonly perceived patient characteristic prompting transfer to ACHD care was adult comorbidities, reported by 83% of respondents. The most common perceived barrier to transfer to ACHD care was emotional attachment of parents (87%) and patients (86%) to their pediatric cardiologist. Attachment of the pediatric cardiologist to the patient was reported as a barrier by 70% of respondents. A lack of qualified ACHD providers was reported by 76% of pediatric cardiologists, less commonly for pediatric cardiologists affiliated with academic institutions.

Conclusions:

Pediatric cardiologists commonly provide care to adults with CHD. The presence of medical comorbidities is the most common indication for transfer of care, while patient and cardiologist attachment are important barriers to transfer.

Perspective:

This survey of pediatric cardiologists in the United States identifies and gives indications for and barriers to transfer of patients with CHD to ACHD care. In addition to attachment issues, a perception of lack of qualified ACHD providers was an important barrier to transfer of care. Pediatric cardiologists may feel that ACHD cardiologists are not as or more qualified than they are to provide care to the adult congenital patient. The expansion of formal ACHD training programs and the establishment of board certification in ACHD care may improve these perceptions. In terms of patient attachment to their pediatric cardiologist, initiation of a transition program in early adolescence may facilitate transfer of care in early adulthood.

Clinical Topics: Congenital Heart Disease and Pediatric Cardiology, Congenital Heart Disease, CHD & Pediatrics and Quality Improvement

Keywords: Child, Patient Transfer, Emotions, Heart Defects, Congenital, Referral and Consultation, Perception, Comorbidity, Data Collection, United States


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