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)

Gary Webb; Barbara J Mulder; Jamil Aboulhosn; Curt J Daniels; Maria Amalia Elizari; Gu Hong; Eric Horlick; Michael J Landzberg; Ariane J Marelli; Clare P O'Donnell; Erwin N Oechslin; Dorothy D Pearson; Els P G Pieper; Anita Saxena; Markus Schwerzmann; Karen K Stout; Carole A Warnes; Paul Khairy

doi:10.1016/j.ijcard.2015.04.230

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)

Int J Cardiol. 2015 Sep 15:195:326-33. doi: 10.1016/j.ijcard.2015.04.230. Epub 2015 May 1.

Authors

Gary Webb¹, Barbara J Mulder², Jamil Aboulhosn³, Curt J Daniels⁴, Maria Amalia Elizari⁵, Gu Hong⁶, Eric Horlick⁷, Michael J Landzberg⁸, Ariane J Marelli⁹, Clare P O'Donnell¹⁰, Erwin N Oechslin⁷, Dorothy D Pearson⁸, Els P G Pieper¹¹, Anita Saxena¹², Markus Schwerzmann¹³, Karen K Stout¹⁴, Carole A Warnes¹⁵, Paul Khairy¹⁶

Affiliations

¹ Cincinnati Children's Hospital Medical Center, University of Cincinnati, Cincinnati, OH, USA.
² Academic Medical Center, The Netherlands Interuniversity Cardiology Institute, Amsterdam, The Netherlands.
³ Ahmanson/UCLA Adult Congenital Heart Disease Center, University of California, Los Angeles, CA, USA.
⁴ The Heart Center, Nationwide Children's Hospital, Ohio State University, Columbus, OH, USA.
⁵ Instituto de Cardiología del Hospital Español de Buenos Aires, Buenos Aires, Argentina.
⁶ Beijing Anzhen Hospital, Capital Medical University, Beijing, China.
⁷ Peter Munk Cardiac Centre, Toronto General Hospital, University of Toronto, Toronto, Ontario, Canada.
⁸ Boston Children's Hospital and Brigham and Women's Hospital, Harvard University, Boston, MA, USA.
⁹ McGill University Health Center, McGill University, Montreal, Quebec, Canada.
¹⁰ Starship and the Auckland City Hospital, University of Auckland, Auckland, New Zealand.
¹¹ University Medical Center Groningen, University of Groningen, Groningen, The Netherlands.
¹² All India Institute of Medical Sciences, New Delhi, India.
¹³ University Hospital Inselspital, University of Bern, Bern, Switzerland.
¹⁴ Seattle Children's Hospital, University of Washington, Seattle, WA, USA.
¹⁵ Mayo Clinic, Mayo Medical School, Rochester, MN, USA.
¹⁶ Montreal Heart Institute, Université de Montréal, Montreal, Quebec, Canada. Electronic address: [email protected].

PMID: 26056966
DOI: 10.1016/j.ijcard.2015.04.230

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.

Keywords: Adult Congenital Heart Disease; Grown-Up Congenital Heart Disease; Position statement; World health.

Publication types

Research Support, Non-U.S. Gov't
Review

MeSH terms

Adult
Child
Global Health* / statistics & numerical data
Global Health* / trends
Heart Defects, Congenital* / epidemiology
Heart Defects, Congenital* / therapy
Humans
Patient Care Management* / methods
Patient Care Management* / organization & administration
Patient Care Management* / trends
Societies, Medical*