Australian Standards redefine care for childhood-onset heart disease
Published: 7 March 2024
Article submitted by: HeartKids (Opens in new tab)
In Australia, a baby is born with a heart condition about every three hours, and many more will develop one during childhood. For many, there is no known cause or no cure, but improved medical management means more people with childhood-onset heart disease (CoHD) are living well into adulthood.
Current CoHD services provide high-level healthcare in many respects. However, a national standard to ensure consistent service delivery for all people with CoHD across Australia has been lacking — until now.
With the recent launch of the Australian National Standards of Care for Childhood-onset Heart Disease by the Hon. Mark Butler, Minister for Health and Aged Care at Parliament House in February 2024, there is now, for the first time, a reference point that describes the breadth of care needed for people with CoHD and their families to ‘live well’ throughout life.
The CoHD Standards will help patients, families and carers know what they should expect to be included in their care. They will also help governments, health services and health professionals design and deliver the range of services to provide holistic care and support.
Parliamentarians, representatives from HeartKids, health professionals working in CoHD, and families impacted by CoHD from across Australia attended last month’s launch event.
Importantly, the CoHD Standards embed mental health and neurodevelopmental care as an integral component of overall care for people impacted by CoHD. This recognises the mental and emotional burden of CoHD on individuals and families, and the need for holistic care beyond medical intervention. The Standards also address challenges to accessing care for particular groups, including people living in regional and remote Australia, and priority populations such as Aboriginal and Torres Strait Islanders and those from culturally diverse backgrounds.
The CoHD Standards are a collaborative effort, combining expert knowledge and published research with lived experience and public consultation. The development process was coordinated by HeartKids, with input from over 130 patients, family and carer representatives, clinicians, researchers, and other key stakeholders across Australia. This work forms part of the National Strategic Plan for Childhood Heart Disease (Opens in new tab) launched in 2019 and is the result of ongoing engagement and advocacy facilitated by HeartKids.
The CoHD Standards are freely available from the Australian National Standards of Care for Childhood-onset Heart Disease website (Opens in new tab). In addition to the complete Standards document, a consumer summary has been published for patients and families and translated into 10 different languages.
Last reviewed: March 2024