Australian Standards of Care for Childhood-onset Heart Disease (CHD)
The project has been the outcome of several years of discussion between government, health professionals involved in CHD care, patients and their families, and advocacy by HeartKids as the peak national body advocating for and supporting patients and families, and who act as funding manager and project coordinator.
The objective of the Standards is to provide a clear framework for long–term excellence in care delivery to patients and families affected by Childhood-onset Heart Disease in Australia. The Standards will cover clinical domains, psychological support, financial considerations, and long term needs of affected patients and families. Importantly these Standards will be patient centric, and will take a whole of life perspective, with clear vision of the adult manifestations (and their implications) of a variety of childhood-onset cardiac abnormalities. They will offer confidence to patients and families and will provide a framework for the development of further resources funded under the National Action Plan including clinical practice guidelines, workforce and infrastructure plans and education and training modules
The project will run over three years, and is Co-Chaired by A/Prof Gary Sholler, a senior paediatric cardiologist, researcher, and national leader in CHD, and Dr. Lisa Selbie, Head of Research and Board member of HeartKids. It is governed by a representative National Steering Committee and a widely representative Advisory Group who will work together on developing the Standards. Further stakeholder input and consultation will be sought throughout the process to ensure the CHD community, patients and families, all levels of government, non-government organisations, appropriate peak bodies and health care providers are included.
At completion, the Standards will be managed by one or more peak professional bodies with regular review to ensure currency, high quality and appropriate professional, stakeholder and government input.