Australia’s first childhood heart disease (CHD) strategy aims to deliver major reforms including national standards of care, continuity of care into adulthood and a national congenital heart disease registry.
Developed by the advocacy group HeartKids in conjunction with the Congenital Heart Alliance of Australia and NZ (CHAANZ), the National Strategic Action Plan for Childhood Heart Disease is backed with government funding of $6 million to deliver on seven major focus areas.
Its goals include:
- National standards of care and clinical practice guidelines to be developed by a CHD taskforce.
- Better mental healthcare and neurodevelopmental care for children.
- Address the critical shortage of adult congenital heart disease (ACHD) cardiologists.
- A National Congenital Heart Disease Registry for Australia and NZ, an annual national CHD survey.
- Focus on priority populations including Indigenous people, young adults transitioning from paediatric to adult cardiac health services, and people living in remote, or rural and regional locations.
- Provision of genetic advice to families and genome sequencing information to clinicians after the diagnosis of CHD.
- Increased awareness, health literacy and support services for CHD patients and their families
Chair of HeartKids research advisory committee Dr Lisa Selbie (PhD) said the seemingly counterintuitive shortage of cardiologists for CHD was down to improved treatment and increased survival rates. Since most people with CHD now survived into adulthood there were now estimated to be more adult CHD patients than paediatric, she told the limbic .
The increase in adult patients meant there was “a massive loss to care in that transition” with at least 50% of adults disconnected from the health system.
And while there were around 30 paediatric cardiologists in Australia in 2010 there was the equivalent of only six full time cardiologists care for adults with CHD.
“When adults present with quite severe issues in an emergency room even the health care professionals often don’t have the speciality awareness of what these patients require,” she said.