It is estimated that over 250,000 Australians live with childhood-onset heart disease (CoHD) and adult congenital heart disease (ACHD). Childhood-onset heart disease includes all heart abnormalities affecting patients before and after birth during childhood, including congenital heart disease. The effects are felt not only by those with CoHD, but also by their families and carers, the healthcare system, the workforce and the national economy.
The Australian National Standards of Care for Childhood-onset Heart Disease (CoHD Standards) describe, for the first time, what excellent, coordinated, patient- and family-centred care looks like for people with CoHD and ACHD.
The CoHD Standards are intended for use by the public (primarily patients and their families and carers), and by health professionals, healthcare service managers and planners, and relevant accreditation bodies.
View the CoHD Standards
Different versions of the CoHD Standards are available on this website for the public and for people working in healthcare. Information is also available in languages other than English.
A framework for excellence
The CoHD Standards define key requirements for delivering care to people with CoHD and supporting them in ‘Living Well’
Preview the Standards
Standard 1 – CoHD Services
Requirements for high quality CoHD healthcare services in Australia, including:
- types of CoHD healthcare services available in Australia
- training and education required for CoHD specialists
- the range of healthcare professionals who provide specialist CoHD healthcare.
Standard 2 – Regional CoHD
Healthcare services in regional areas, covering:
- provision of coordinated high quality care close to home where possible
- information sharing between regional CoHD/other healthcare providers and CoHD specialists from large city services.
Standard 3 – Paediatric Cardiology
Requirements for paediatric cardiologists, including:
- specialist CoHD knowledge and skills in diagnostic imaging
- care during pregnancy
- family genetic assessment and counselling
- interventional cardiac catheter procedures in childhood
- conditions impacting heart rhythm
- specialist care for heart failure.
Standard 4 – Paediatric Cardiac and ACHD Surgery
Congenital cardiac surgery for children and adults, including:
- specialist knowledge and training requirements for paediatric and adult congenital heart surgeons
- specialist knowledge, skills and training for CoHD anaesthetists and perfusionists
- access to specialist nurses for patients and families
- requirements when assessing the need for heart transplantation
- how services are evaluated.
Standard 5 – Transition to Adult Care
Transitioning form paediatric to adult CoHD care, including:
- the importance of starting transition early
- a carefully planned process
- transitions that are individually tailored for patients, families and their carers.
Standard 6 – ACHD Cardiology
Requirements for specialist cardiologists who care for adults with congenital heart disease (ACHD), covering:
- specialist knowledge and training
- comprehensive care for patients, families and carers.
Standard 7 – Nursing
High quality CoHD nursing care for paediatric and adult patients delivered by:
- specialist Advanced Practice Nurses
- specialised CoHD nurses who have knowledge, training and skills in caring for patients, families and carers.
Standard 8 – Mental Health and Psychological Care
Mental health and support for patients, families and carers, including:
- care that begins at diagnosis
- care that is integrated into CoHD healthcare
- end-of-life and bereavement care.
Standard 9 – Neurodevelopmental and Neurocognitive Care
Neurodevelopmental and neurocognitive care including:
- supporting development through infancy, childhood, adolescence and adulthood
- neurodevelopmental and neurocognitive screening, evaluation and care
- responding to developmental needs both in and outside the hospital
Standard 10 – Priority Populations
Equitable access to coordinated CoHD healthcare for:
- Australia’s Aboriginal and Torres Strait Islander peoples
- those with refugee backgrounds
- those with limited access to healthcare.
CoHD healthcare should:
- be sensitively planned
- be culturally respectful
- be compassionate
- emphasise the importance of knowledge of the impact of trauma
- improve cultural, social and environmental support for patients, families and carers.
Standard 11 – Research
The role of research. Involvement in CoHD national and international research should:
- be driven by discovery
- involve the whole of life
- be guided by patient experience.
Standard 12 – Health Information and Digital Communication Technology
High quality CoHD services across Australia through quality, secure technology to improve collaboration on and communication of patient care details, including:
- telehealth
- databases
- digital communication tools and,
- establishment of peak craft groups.