Australian National Standards of Care for Childhood-onset Heart Disease (CoHD Standards). 1st Edition

Gary F Sholler AM; Lisa A Selbie; Mary Tallon; Jessica Keating; Julian Ayer; Luke Burchill; Michael M H Cheung; Rachael Cordina; Evelyn Culnane; Shakira Donovan; Lucas Eastaugh; Caitlin Elliott; Jeffery Fletcher; Robert N Justo; Nadine A Kasparian; Andrew Kelly; Dominique Morsman; Mugur Nicolae; Yishay Orr; Elle Pendrick; James M Ramsay; Bo Reményi; Stephen Shipton; Robert G Weintraub; Elsa Van Wijk; Gavin Wheaton; Prem Venugopal; Australian National CoHD Standards Writing Group

doi:10.1016/j.hlc.2023.03.017

Australian National Standards of Care for Childhood-onset Heart Disease (CoHD Standards). 1st Edition

Heart Lung Circ. 2024 Feb;33(2):153-196. doi: 10.1016/j.hlc.2023.03.017. Epub 2024 Feb 9.

Authors

Gary F Sholler AM¹, Lisa A Selbie², Mary Tallon³, Jessica Keating⁴, Julian Ayer⁵, Luke Burchill⁶, Michael M H Cheung⁷, Rachael Cordina⁸, Evelyn Culnane⁹, Shakira Donovan¹⁰, Lucas Eastaugh⁹, Caitlin Elliott⁹, Jeffery Fletcher¹¹, Robert N Justo¹², Nadine A Kasparian¹³, Andrew Kelly¹⁴, Dominique Morsman⁹, Mugur Nicolae¹⁵, Yishay Orr⁵, Elle Pendrick⁴, James M Ramsay¹⁶, Bo Reményi¹⁷, Stephen Shipton¹⁶, Robert G Weintraub¹⁸, Elsa Van Wijk¹⁹, Gavin Wheaton²⁰, Prem Venugopal²¹; Australian National CoHD Standards Writing Group

Affiliations

¹ Sydney Children's Hospitals Network, NSW, Australia; Heart Centre for Children, Sydney, NSW, Australia; The University of Sydney, Sydney, NSW, Australia. Electronic address: [email protected].
² HeartKids Ltd, Parramatta, NSW, Australia; School of Biotechnology & Biomolecular Sciences University of NSW, Sydney, NSW, Australia and Johns Hopkins University, Baltimore, MD, USA.
³ HeartKids Ltd, Parramatta, NSW, Australia; Perth Children's Hospital, Perth, WA, Australia; School of Nursing, Curtin University, Perth, WA, Australia.
⁴ HeartKids Ltd, Parramatta, NSW, Australia.
⁵ Sydney Children's Hospitals Network, NSW, Australia; Heart Centre for Children, Sydney, NSW, Australia; The University of Sydney, Sydney, NSW, Australia.
⁶ The Royal Melbourne Hospital, Melbourne, Vic, Australia and Mayo Clinic, Rochester, New York, NY, USA.
⁷ The University of Melbourne, Melbourne, Vic, Australia; The Royal Children's Hospital, Melbourne, Vic, Australia.
⁸ The University of Sydney, Sydney, NSW, Australia; Royal Prince Alfred Hospital, Sydney, NSW, Australia.
⁹ The Royal Children's Hospital, Melbourne, Vic, Australia.
¹⁰ The University of Notre Dame, Fremantle, WA, Australia.
¹¹ Queensland Paediatric Specialists, Southport, Qld, Australia; Department of Paediatrics, The Tweed Hospital, Tweed Heads, NSW, Australia and Griffith University, Brisbane, Qld, Australia.
¹² Queensland Children's Hospital, South Brisbane, Qld, Australia; The University of Queensland, Herston, Qld, Australia; Queensland Paediatric Cardiac Research, Children's Health Queensland, South Brisbane, Qld, Australia.
¹³ Sydney Children's Hospitals Network, NSW, Australia; Heart Centre for Children, Sydney, NSW, Australia; Heart Institute and Division of Behavioral Medicine and Clinical Psychology, Cincinnati Children's Hospital, Ohio, OH, USA.
¹⁴ Women's and Children's Hospital, North Adelaide, SA, Australia.
¹⁵ The University of Queensland, Herston, Qld, Australia; Mater Hospital Services, Brisbane, Qld, Australia.
¹⁶ Perth Children's Hospital, Perth, WA, Australia.
¹⁷ Menzies School of Health Research, Charles Darwin University, Darwin, NT and Royal Darwin Hospital, Darwin, NT, Australia.
¹⁸ The University of Melbourne, Melbourne, Vic, Australia; The Royal Children's Hospital, Melbourne, Vic, Australia; Murdoch Children's Research Institute, Melbourne, Vic, Australia.
¹⁹ HeartKids Ltd, Parramatta, NSW, Australia; Australian Institute of Company Directors, NSW, Australia.
²⁰ Women's and Children's Hospital, North Adelaide, SA, Australia; University of Adelaide, Adelaide, SA, Australia.
²¹ Queensland Children's Hospital, South Brisbane, Qld, Australia; The University of Queensland, Herston, Qld, Australia.

PMID: 38453293
DOI: 10.1016/j.hlc.2023.03.017

Abstract

These first Australian National Standards of Care for Childhood-onset Heart Disease (CoHD Standards) have been developed to inform the healthcare requirements for CoHD services and enable all Australian patients, families and carers impacted by CoHD (paediatric CoHD and adult congenital heart disease [ACHD]) to live their best and healthiest lives. The CoHD Standards are designed to provide the clarity and certainty required for healthcare services to deliver excellent, comprehensive, inclusive, and equitable CoHD care across Australia for patients, families and carers, and offer an iterative roadmap to the future of these services. The CoHD Standards provide a framework for excellent CoHD care, encompassing key requirements and expectations for whole-of-life, holistic and connected healthcare service delivery. The CoHD Standards should be implemented in health services in conjunction with the National Safety and Quality Health Service Standards developed by the Australian Commission on Safety and Quality in Health Care. All healthcare services should comply with the CoHD Standards, as well as working to their organisation's or jurisdiction's agreed clinical governance framework, to guide the implementation of structures and processes that support safe care.

MeSH terms

Adult
Australia / epidemiology
Child
Delivery of Health Care
Heart Defects, Congenital* / therapy
Humans
Standard of Care