Launched in Parliament House, Canberra, in February, the study 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 children with heart disease have higher psycho-social and behavioural needs which, in turn, affect schooling and quality of life. The study found that the Australian health system was not equipped to meet the ongoing needs of these children and their families.
It also recommends reviewing guidelines for the provision of paediatric cardiologists on a population basis, to take into account Australia’s geography and the needs of our Indigenous population. The original guidelines, says Professor Leggat, were established for the UK.
For her research, Professor Leggat’s consulted widely with patients, families, care workers, clinicians and researchers. She also examined recent State health system reviews which highlight that the organisation of the paediatric health system may be contributing to suboptimal patient outcomes. The result was a ‘White Paper’ Childhood Heart Disease in Australia – Current Practices and Future Needs.
‘I found 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 neuro-cognitive dysfunction. Since less than ten 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 generally lower health status in the Northern Territory and among Australian Indigenous groups, Professor Leggat says these communities experience higher death rates for childhood heart disease (CHD).
‘To ensure best practice care, hospitals consolidate highly complex procedures and these tend to be centralised in major cities. While this is supported internationally as the best way to organise care, it means that rural families uproot their lives to tend to the needs of someone with CHD.’
Of even more concern, she says, is that once these families return home, continued care is often unavailable. As hospital-centred health reforms are increasingly thrust into the spotlight, Professor Leggat’s White Paper calls for better planning, distribution and co-ordination of CHD services and resources. The White Paper received bipartisan support at the launch at Parliament House.
Read more: http://www.heartkids.org.au/images/uploads/state/forms/White_Paper_Press_Release_2011.pdf