title: Implementation of the American College of Cardiology/American Heart Association 2008 Guidelines for the Management of Adults With Congenital Heart Disease.
abstract: Although different guidelines on adult congenital heart disease (ACHD) care advocate for lifetime cardiac follow-up, a critical appraisal of the guideline implementation is lacking. We investigated the implementation of the American College of Cardiology/American Heart Association 2008 guidelines for ACHD follow-up by investigating the type of health care professional, care setting, and frequency of outpatient visits in young adults with CHD. Furthermore, correlates for care in line with the recommendations or untraceability were investigated. A cross-sectional observational study was conducted, including 306 patients with CHD who had a documented outpatient visit at pediatric cardiology before age 18 years. In all, 210 patients (68.6%) were in cardiac follow-up; 20 (6.5%) withdrew from follow-up and 76 (24.9%) were untraceable. Overall, 198 patients were followed up in tertiary care, 1/4 (n = 52) of which were seen at a formalized ACHD care program and 3/4 (n = 146) remained at pediatric cardiology. Of those followed in formalized ACHD and pediatric cardiology care, the recommended frequency was implemented in 94.2% and 89%, respectively (p = 0.412). No predictors for the implementation of the guidelines were identified. Risk factors for becoming untraceable were none or lower number of heart surgeries, health insurance issues, and nonwhite ethnicity. In conclusion, a significant number of adults continue to be cared for by pediatric cardiologists, indicating that transfer to adult-oriented care was not standard practice. Frequency of follow-up for most patients was in line with the ACC/AHA 2008 guidelines. A considerable proportion of young adults were untraceable in the system, which makes them vulnerable for discontinuation of care.
authors.affiliation: Department of Public Health and Primary Care, KU Leuven-University of Leuven, Leuven, Belgium; Research Foundation Flanders, Brussels, Belgium.
authors.forename: Eva
authors.initials: E
authors.lastname: Goossens
authors.affiliation: Lucile Packard Children's Hospital at Stanford, Palo Alto, California; Department of Cardiology, Boston Adult Congenital Heart (BACH) Group, Boston Children's Hospital (BCH), Boston, Massachusetts.
authors.forename: Susan M
authors.initials: SM
authors.lastname: Fernandes
authors.affiliation: Department of Cardiology, Boston Adult Congenital Heart (BACH) Group, Boston Children's Hospital (BCH), Boston, Massachusetts.
authors.forename: Michael J
authors.initials: MJ
authors.lastname: Landzberg
authors.affiliation: Department of Public Health and Primary Care, KU Leuven-University of Leuven, Leuven, Belgium; The Heart Centre, Copenhagen University Hospital, Copenhagen, Denmark; Institute of Health and Care Sciences, University of Gothenburg, Gothenburg, Sweden. Electronic address: philip.moons@kuleuven.be.
authors.forename: Philip
authors.initials: P
authors.lastname: Moons
mesh_terms: D000293:Adolescent; D000328:Adult; D000572:American Heart Association; D002309:Cardiology; D003430:Cross-Sectional Studies; D019468:Disease Management; D005260:Female; D006330:Heart Defects, Congenital / Q000628:therapy*; D006801:Humans; D008297:Male; D017410:Practice Guidelines as Topic; D014481:United States; D055815:Young Adult