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.
- Congenital heart disease
- Health services
- Quality and outcomes
ASJC Scopus subject areas
- Cardiology and Cardiovascular Medicine