title: The long road to better ACHD care.
abstract: The care of adult patients with congenital heart defects in the United States is spotty at best, and needs to improve greatly if the needs of these patients are to be met. The care of American children with congenital heart defects is generally excellent. Pediatric cardiac services are well established and well supported. The care of adults with congenital heart disease (CHD) is well established in only a few American centers. While there are an increasing number of clinics, they are generally poorly resourced with relatively few patients. If located in adult cardiology programs, they are usually minor players. If located in pediatric cardiac programs, they are usually minor players as well. Training programs for adult CHD (ACHD) caregivers are few, informal, and poorly funded. To improve the situation, we need perhaps 25 well-resourced and well-established regional ACHD centers in the United States. We need to stop the loss to care of CHD patients at risk of poor outcomes. We need to educate patients and families about the need for lifelong and skilled surveillance and care. We need to effect an orderly transfer from pediatric to adult care. We need to strengthen the human resource infrastructure of ACHD care through the training and hiring of healthcare professionals of a quality equivalent to those working in the pediatric care environment. We need to demonstrate that adult care is high quality care. We need more high-quality ACHD research. The ACHD community needs to establish its credibility with pediatric cardiac providers, adult cardiology groups, with governments, with professional organizations, and with research funding agencies. Accordingly, there is a need for strong political action on behalf of American ACHD patients. This must be led by patients and families. These efforts should be supported by pediatric cardiologists and children's hospitals, as well as by national professional organizations, governments, and health insurance companies. The goal of this political action should be to see that ACHD patients can receive high-quality lifelong surveillance, that we lose fewer patients to care, and that the staff and other services needed are available nationwide.
authors.affiliation: Cincinnati Children's Hospital Heart Institute, Cincinnati, Ohio 45229, USA. gary.webb@cchmc.org
authors.forename: Gary
authors.initials: G
authors.lastname: Webb
mesh_terms: D000328:Adult; D002170:Canada; D002300:Cardiac Care Facilities / Q000331:legislation & jurisprudence / Q000458:organization & administration*; D003153:Community Health Services / Q000331:legislation & jurisprudence / Q000458:organization & administration*; D003266:Continuity of Patient Care / Q000331:legislation & jurisprudence / Q000458:organization & administration*; D019033:Delivery of Health Care, Integrated / Q000331:legislation & jurisprudence / Q000458:organization & administration*; D018166:Health Care Reform; D006297:Health Services Accessibility / Q000331:legislation & jurisprudence / Q000458:organization & administration*; D006330:Heart Defects, Congenital / Q000175:diagnosis / Q000628:therapy*; D006752:Hospital Planning / Q000458:organization & administration; D006801:Humans; D009937:Organizational Objectives; D010347:Patient Care Planning / Q000331:legislation & jurisprudence / Q000458:organization & administration*; D010348:Patient Care Team / Q000458:organization & administration; D016730:Program Development; D011787:Quality of Health Care / Q000331:legislation & jurisprudence / Q000458:organization & administration*; D016896:Treatment Outcome; D014481:United States