Association of Adults With Congenital Heart Disease–Specific Care With Clinical Characteristics and Healthcare Use

BACKGROUND: Many adults with congenital heart disease (ACHD) are cared for by non‐ACHD specialists, if they receive care at all. Little is known about the differences between those who access care at an ACHD center and those who do not access ACHD‐specific care. METHODS AND RESULTS: The Oregon All Payer All Claims database was queried to identify subjects aged 18 to 65 years with an International Classification of Diseases, Ninth Revision (ICD‐9) code consistent with ACHD from 2010 to 2015. ACHD center providers were identified using National Provider Identification numbers. Usage rates and percentages were calculated with person‐years in the denominator, and rate ratios and odds ratios (ORs) were estimated using negative binomial and logistic regression. Only 11.7% of identified individuals (N=10 199) were seen at the ACHD center. These individuals were younger (median 36 versus 47 years; P<0.0001) and had higher rates of Medicaid insurance (47.8% versus 28.4%; P<0.0001), heart failure (31.4% versus 15.3%; P<0.0001), and arrhythmia (75.5 versus 49.2%; P<0.0001). They had more visits of all types (outpatient: 79% per year versus 64% per year [age‐adjusted OR, 2.54; 99% CI, 2.24–2.88]; emergency department: 29% versus 22% per year [adjusted OR, 1.34; 99% CI, 1.18–1.52]; inpatient: 17% versus 12.0% per year [adjusted OR, 1.92; 99% CI, 1.67–2.20]). Rates of guideline‐indicated annual echocardiography were low (7.7% overall, 13.4% in patients at the ACHD center). CONCLUSIONS: Patients at an ACHD center comprise a distinct and complex group with a high rate of healthcare use and a relatively higher compliance with guideline‐indicated annual follow‐up. These findings underscore the importance of building and supporting robust systems for ACHD care in the United States.