Professor Sandra Leggat releases study

A national study by La Trobe University Health Services expert Sandra Leggat has called for the establishment of a national register of Childhood Heart Disease.

Sandra LeggatThe study – to be launched in Parliament House, Canberra today – found that about 64,000 Australians live with congenital heart disease, half of whom are under the age of 18.

Survival rates have risen in the past 20 years, yet studies have shown children with CHD have higher psycho-social and behavioural needs which in turn affect schooling and quality of life. The study found that the Australian health system is not equipped to meet the ongoing needs of these children and their families through their life course.

Professor Leggat consulted at length with patients, families, care workers, clinicians and researchers. She also examined recent State health system reviews which highlight that the current paediatric health system organisation may be contributing to suboptimal patient outcomes. The result of the research was the ‘White Paper’ – Childhood Heart Disease in Australia – Current Practices and Future Needs.

‘What I found was medical practice and technology to be growing at such a rapid rate that our current systems of post-operative and rehabilitative care cannot catch up. Scientific advancement has saved so many lives that we forget that these children would not be alive without it and they and their families need to be supported with ongoing care,’ says Professor Leggat.

‘There is no cure for congenital heart disease. Survivors of successful childhood treatment can face life-long risks like heart-failure, stroke and neurocognitive dysfunction and since less than 10 percent of adults receive recommended cardiac care, many individuals are unaware they require life-long health surveillance,’ says Professor Leggat. Creation of a national register, similar to the European model, would enable clinicians and researchers to identify how best to care for these children as they age. 

Consistent with the generally lower health status in Northern Territory and Australian Indigenous communities, there are higher death rates for CHD in these communities. ‘To ensure best practice care, hospitals need to consolidate highly complex procedures and this means that these procedures tend to be centralised in the major cities. While this is supported internationally as the best way to organise care delivery, it means that rural families uproot their lives in order to tend to the needs of someone with CHD. And even more concerning, once these families return home continued care is often unavailable,’ says Professor Leggat.

As hospital centred health reforms are thrust into the spotlight, Professor Leggat has made some informed recommendations within the ‘White Paper’ about better planning, distributing and coordinating CHD services and resources.

‘I have made recommendations to the Paediatric Congenital Council (PCC) and associated clinicians, Federal and State Governments and HeartKids, such as funding and the application of a national congenital heart register’ says Professor Leggat.

Professor Leggat has also recommended a review to guidelines for the provision of paediatric cardiologists on a population basis taking into account the geography and Indigenous population requirements as the original guidelines were established for UK needs.

Launch of the ‘White Paper’ will be held at Parliament House, Canberra where Professor Leggat will officially introduce her extensive research to government officials including Her Excellency Ms Quentin Bryce AC, Governor-General of the Commonwealth of Australia.

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Meghan Lodwick

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