Australia’s first national standards for childhood-onset heart disease

  • The launch of the CoHD Standards

The launch of the CoHD Standards was attended by the Health Minister, members of parliament, health professionals working in CoHD, HeartKids representatives, and families impacted by CoHD. 

Last month, the first Australian National Standards of Care for Childhood-onset Heart Disease were launched by The Hon. Mark Butler MP, Minister for Health and Aged Care at Parliament House in Canberra.  These standards describe, for the first time in Australia, the comprehensive care needed for people with childhood-onset heart disease and their families to ‘live well’, and provide a reference point for patients, families, health professionals and health services.

Childhood-onset heart disease (CoHD) includes congenital heart conditions and heart conditions acquired during childhood, such as damage from rheumatic heart fever. Congenital heart disease is the number one cause of death of children in the first year of life. Many more children living with heart disease need lifelong care.  

Work on the Australian National Standards of Care for Childhood-onset Heart Disease (CoHD Standards) began in 2020 as part of the National Strategic Plan for Childhood Heart Disease. This was the culmination of a decade of engagement and advocacy facilitated by HeartKids. But the real beginnings of this work go back even further to a parent group with a shared need.

HeartKids traces its beginnings back to 1977 in Perth where some mums of children with congenital heart disorders first came together to support each other. That group became the first formal HeartKids committee. Other HeartKids groups formed across all states until 2016, when HeartKids Australia was established as a national body. Today, HeartKids is the only national not-for-profit organisation dedicated to supporting and advocating for people of all ages impacted by CoHD.

What started as a parent community providing mutual support has since grown into a national charity that has coordinated the development of comprehensive standards of care for CoHD. The CoHD Standards will help health services design care that addresses all types of CoHD, considers challenges for specific patient populations, and applies at all levels of the health system. And in an example of life coming full circle, they will help future parents in the same situation know what optimal care for their child should look like.  

HeartKids CEO Lesley Jordan says the CoHD Standards are centred around the principle of living well and take a whole-of-life approach, reflecting the reality that many people and their families manage this condition their entire lives.

“These Standards of Care contain best practice frameworks around twelve priority areas including CoHD care in regional and remote communities and priority populations, mental health, neurodevelopment, and transition from paediatric to adult care. They are an invaluable resource, and we are proud they’re available to everyone in the CoHD community and workforce.”

Two standards focus on regional care and priority populations. These recognise the barriers to access for people with CoHD in regional and remote locations around Australia, and for particular groups such as Aboriginal and Torres Strait Islander peoples and people with culturally diverse backgrounds. They highlight the importance of access to care close to home and access to culturally safe, trauma-informed care. 

Paediatric and fetal cardiologist, Professor Gary Sholler AM, co-chair of the project with Dr Lisa Selbie, acknowledges the challenges for people with CoHD in regional areas. “Current CoHD services provide quality care in many parts of the health system. However, there remain some limitations to access in regional and rural areas, barriers to delivering holistic care that meets the unique needs of Australia’s priority populations, and the impacts of geography and regional services.”  

The next phase will involve uptake and implementation by health services and related bodies to make the described standards of care a reality for patients and families.

The CoHD Standards are available from the Australian National Standards of Care for Childhood-onset Heart Disease website. In addition to the complete Standards document, a consumer summary has been published for patients and families, which is available translated into ten different languages.

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