Abstract 3215: US Resources for Care of Adults with Congenital Heart Disease
We sought to determine the number, size, personnel, and resources of centers dedicated to the care of adult congenital heart disease (ACHD) patients (pts). 48 pediatric (P) and 174 adult (A) cardiology programs, 125 university hospitals and other major clinics were queried using a questionnaire with telephone follow-up.
Findings: 55 centers responded from 31 states and Washington, DC. 10% were founded before 1990, 52% were founded since 2000. Centers follow 32,460 or 4% of the 800,000 US pts with a median of 450 pts/center. Mean±SD was 612±527. Median new consults and established pts seen are 100 (179±198) and 344 (531±637). Patients followed increases with center age; the older programs follow 4.2 fold more than newer programs. Medical directors were split between A and P training, 16 programs had co-directors. Sites employed 1.5±1.2 (range 0 – 6) mid-level practitioners. 2.4±2 half-day clinics are held weekly (range <1–9) seeing 7±5 pts/session (range 1–27). Clinics are held in 8 P, 21 A or 21 both A&P sites; inpatient care is in 4 P, 14 A or 29 both A&P settings. 50% have established transition programs, transition age ranges from 16 to 21 yrs. Most diagnostic and interventional modalities and high-risk obstetrics are widely available. Centers perform a median of 256 (346±276) total CHD surgical cases/yr of which 12% or 42±37 are ACHD cases (median 36, range 0–250). 9% (median 6%, range 0–32%) of patients followed undergo surgery annually; this rate rises from 5– 6% in the oldest centers to 9–21% in the newer centers. 80% of centers offer cardiac transplant and 30% lung transplant with rare ACHD cases/yr of either kind.
Conclusions: ACHD centers have grown rapidly since 1990, both A and P cardiologists contribute. Only 4% of ACHD pts (8% of complex pts) are seen in centers. Newer programs should plan for a shift in ACHD patient needs from surgical to medical as the centers grow.