title: From numbers to guidelines.
abstract: Advances in pediatric cardiology and cardiac surgery have resulted in a change in the mortality, prevalence, and age distribution of patients with congenital heart disease (CHD). In this chapter, we review the changing epidemiology of CHD and the impact of these trends on health services utilization and delivery in this population. We demonstrate not only that adult CHD (ACHD) patients have high utilization rates but also that care gaps exist where disease is expected to be lifelong. We outline the components of quality improvement for the care of ACHD patients. We review the newly published guidelines for the management of CHD conditions in adults, anchoring them to structure, process, and outcome indexes of quality of care. We highlight the manpower needs and the importance of an appropriately trained cardiology workforce to provide ACHD care. Finally, we review recommended health care systems ideally suited to deliver care to this population.
authors.affiliation: McGill Adult Unit for Congenital Heart Disease (MAUDE Unit), McGill University Health Center, Montreal, Quebec, Canada. ariane.marelli@mcgill.ca
authors.forename: Ariane J
authors.initials: AJ
authors.lastname: Marelli
authors.forename: Michelle
authors.initials: M
authors.lastname: Gurvitz
mesh_terms: D000328:Adult; D002170:Canada / Q000453:epidemiology; D002309:Cardiology / Q000193:education; D002648:Child; D003266:Continuity of Patient Care / Q000458:organization & administration; D006296:Health Services / Q000706:statistics & numerical data*; D006297:Health Services Accessibility; D006330:Heart Defects, Congenital / Q000453:epidemiology* / Q000401:mortality; D006760:Hospitalization / Q000706:statistics & numerical data; D006801:Humans; D017410:Practice Guidelines as Topic; D015995:Prevalence; D011787:Quality of Health Care; D017741:Survivors; D014481:United States / Q000453:epidemiology