title: The care of adults with congenital heart disease across the globe: Current assessment and future perspective: A position statement from the International Society for Adult Congenital Heart Disease (ISACHD).
abstract: The number of adults with congenital heart disease (CHD) has increased markedly over the past few decades as a result of astounding successes in pediatric cardiac care. Nevertheless, it is now well understood that CHD is not cured but palliated, such that life-long expert care is required to optimize outcomes. All countries in the world that experience improved survival in CHD must face new challenges inherent to the emergence of a growing and aging CHD population with changing needs and medical and psychosocial issues. Founded in 1992, the International Society for Adult Congenital Heart Disease (ISACHD) is the leading global organization of professionals dedicated to pursuing excellence in the care of adults with CHD worldwide. Recognizing the unique and varied issues involved in caring for adults with CHD, ISACHD established a task force to assess the current status of care for adults with CHD across the globe, highlight major challenges and priorities, and provide future direction. The writing committee consisted of experts from North America, South America, Europe, South Asia, East Asia, and Oceania. The committee was divided into subgroups to review key aspects of adult CHD (ACHD) care. Regional representatives were tasked with investigating and reporting on relevant local issues as accurately as possible, within the constraints of available data. The resulting ISACHD position statement addresses changing patterns of worldwide epidemiology, models of care and organization of care, education and training, and the global research landscape in ACHD.
authors.affiliation: Cincinnati Children's Hospital Medical Center, University of Cincinnati, Cincinnati, OH, USA.
authors.forename: Gary
authors.initials: G
authors.lastname: Webb
authors.affiliation: Academic Medical Center, The Netherlands Interuniversity Cardiology Institute, Amsterdam, The Netherlands.
authors.forename: Barbara J
authors.initials: BJ
authors.lastname: Mulder
authors.affiliation: Ahmanson/UCLA Adult Congenital Heart Disease Center, University of California, Los Angeles, CA, USA.
authors.forename: Jamil
authors.initials: J
authors.lastname: Aboulhosn
authors.affiliation: The Heart Center, Nationwide Children's Hospital, Ohio State University, Columbus, OH, USA.
authors.forename: Curt J
authors.initials: CJ
authors.lastname: Daniels
authors.affiliation: Instituto de Cardiología del Hospital Español de Buenos Aires, Buenos Aires, Argentina.
authors.forename: Maria Amalia
authors.initials: MA
authors.lastname: Elizari
authors.affiliation: Beijing Anzhen Hospital, Capital Medical University, Beijing, China.
authors.forename: Gu
authors.initials: G
authors.lastname: Hong
authors.affiliation: Peter Munk Cardiac Centre, Toronto General Hospital, University of Toronto, Toronto, Ontario, Canada.
authors.forename: Eric
authors.initials: E
authors.lastname: Horlick
authors.affiliation: Boston Children's Hospital and Brigham and Women's Hospital, Harvard University, Boston, MA, USA.
authors.forename: Michael J
authors.initials: MJ
authors.lastname: Landzberg
authors.affiliation: McGill University Health Center, McGill University, Montreal, Quebec, Canada.
authors.forename: Ariane J
authors.initials: AJ
authors.lastname: Marelli
authors.affiliation: Starship and the Auckland City Hospital, University of Auckland, Auckland, New Zealand.
authors.forename: Clare P
authors.initials: CP
authors.lastname: O'Donnell
authors.affiliation: Peter Munk Cardiac Centre, Toronto General Hospital, University of Toronto, Toronto, Ontario, Canada.
authors.forename: Erwin N
authors.initials: EN
authors.lastname: Oechslin
authors.affiliation: Boston Children's Hospital and Brigham and Women's Hospital, Harvard University, Boston, MA, USA.
authors.forename: Dorothy D
authors.initials: DD
authors.lastname: Pearson
authors.affiliation: University Medical Center Groningen, University of Groningen, Groningen, The Netherlands.
authors.forename: Els P G
authors.initials: EP
authors.lastname: Pieper
authors.affiliation: All India Institute of Medical Sciences, New Delhi, India.
authors.forename: Anita
authors.initials: A
authors.lastname: Saxena
authors.affiliation: University Hospital Inselspital, University of Bern, Bern, Switzerland.
authors.forename: Markus
authors.initials: M
authors.lastname: Schwerzmann
authors.affiliation: Seattle Children's Hospital, University of Washington, Seattle, WA, USA.
authors.forename: Karen K
authors.initials: KK
authors.lastname: Stout
authors.affiliation: Mayo Clinic, Mayo Medical School, Rochester, MN, USA.
authors.forename: Carole A
authors.initials: CA
authors.lastname: Warnes
authors.affiliation: Montreal Heart Institute, Université de Montréal, Montreal, Quebec, Canada. Electronic address: paul.khairy@umontreal.ca.
authors.forename: Paul
authors.initials: P
authors.lastname: Khairy
mesh_terms: D000328:Adult; D002648:Child; D014943:Global Health / Q000706:statistics & numerical data / Q000639:trends; D006330:Heart Defects, Congenital / Q000453:epidemiology / Q000628:therapy; D006801:Humans; D010346:Patient Care Management / Q000379:methods / Q000458:organization & administration / Q000639:trends; D012955:Societies, Medical
keywords: Adult Congenital Heart Disease; Grown-Up Congenital Heart Disease; Position statement; World health