Of the approximately 1.3 million adult survivors with congenital heart disease (CHD) living in the United States, only a small percentage appears to be receiving specialized care in accordance with the American College of Cardiology (ACC) 2008 Guidelines for the Management of Adult Congenital Heart Disease (ACHD) ((1),2). In the absence of comprehensive data sets, it is unclear where and how the remainder of these survivors of ACHD receive care. To further our understanding of ACHD care provision, we sought to determine the prevalence of general adult cardiologists who care for patients with ACHD, identify their patterns of consulting ACHD specialists, and assess their awareness of published ACHD care guidelines.

In collaboration with the ACC, we conducted a randomized cross-sectional Web-based survey in November 2009 of ACC members who were board certified in general adult cardiology in the United States. ACHD specialist was defined as a cardiologist with either pediatric cardiology or general adult cardiology certification who has a self-described expertise in ACHD. Cardiac diagnoses were categorized according to previously published criteria (1). The project was approved by the Children's Hospital Boston Center for Clinical Investigation.

We identified 1,583 ACC members who met study criteria. The overall response rate was 22.4% (355 of 1,583), with 219 (61.6%) meeting the eligibility criterion of being a general adult cardiologist without ACHD specialization or pediatric cardiology certification. Respondent characteristics can be found in (Table 1).

The majority of respondents (95.4%) stated that they treated patients with ACHD. Patients with simple disease comprised 82.8% of the ACHD volume for respondents, patients with moderate disease comprised 12.1% of the volume, and patients with complex disease comprised 3.9% of the volume. Of those respondents who cared for patients with ACHD, 83.5% stated they had at least 1 patient with moderate disease and 45.2% stated they had at least 1 patient with complex disease in their practice.

Slightly more than half of respondents (61.5%) felt that they had access to an ACHD specialist for consultation. Few respondents (9.0%) caring for patients with simple heart lesions, 40.7% of those caring for patients with moderate disease, and 27.5% of those caring for patients with complex disease reported seeking consultation from an ACHD specialist. National ACHD care guidelines were used by the majority of respondents (79.5%). There was no difference in the observed complexity of patients under care, the perceived access to an ACHD specialist, or the noted use of ACHD care guidelines by the respondent's age, years in practice, practice setting, or geographic location (U.S. region).

Nearly all respondents (99.0%) stated the desire for additional information regarding the care of adults with CHD. The most desired means for receiving this information were continuing medical education programs (56.1%), Web-based resources (54.6%), and “grand rounds”– or “visiting professor”–type lectures (35.1%).

In response to improved survival of patients with CHD, a growing number of self-described ACHD providers and clinics have evolved; however, the number of patients with ACHD seen in these specialized clinics is far less than expected. Although it is likely that many patients may be “lost to follow up,” there are likely many others who transferred to general adult cardiology care. Our current study demonstrated that the overwhelming majority of general adult cardiologists (95%) provide care to patients with ACHD, with nearly half reporting caring for at least 1 patient with complex CHD. Fewer than half of our respondents reported seeking consultation from an ACHD specialist when providing care to patients with moderate CHD; even fewer reported seeking such consultation when caring for patients with complex disease. The reasons why some general adult cardiologists do not routinely seek ACHD specialist consultation are unclear, but lack of recognized access appears to be a significant component. A substantial number of our respondents (38.5%) reported not having access to an ACHD specialist.

Today there are more than 1 million adult survivors with CHD (3), and the percentage of adult survivors with complex CHD is increasing (4). The slow evolution of ACHD care programs and board specialty certification of ACHD providers has likely contributed to a perceived lack of access to specialized ACHD care. Coupled with additional evidence suggesting that there are currently not enough clinicians with expertise in ACHD care for this growing population (5), we suggest that a coordinated team approach is essential to bridge any gaps in care. The general adult cardiologist needs to be an integral component of this team, together with pediatric cardiologists, primary care physicians, and ACHD specialists. Self-described (and, in the future, accredited) ACHD centers of excellence throughout the United States need to reach out to the general adult cardiology community and consider innovative ways to provide education, resources, and easily accessible consultation.

This study has several limitations, including the potential for leading question bias and social desirability response bias, which may have overestimated or underestimated the percentage of respondents who care for patients with ACHD. In addition, the low response rate may have undermined external validity.

Today, the majority of general adult cardiologists provide care to patients with CHD, many with moderate or complex disease. Despite awareness and use of national ACHD care guidelines, many do not seek ACHD subspecialty consultation when providing care to patients with ACHD. For multiple reasons, a perceived lack of access to ACHD care providers appears to be a substantive barrier to consultation. General adult cardiologists, together with pediatric cardiologists, primary care providers, and ACHD care subspecialists need to be considered integral members of coordinated ACHD care teams. Ensuring that all ACHD care team members have ready access to ACHD education and consultation appears both prudent and imperative to optimize quality outcomes and to extend innovative congenital cardiac care to adult survivors of CHD.