Children’s Health Queensland, in partnership with the Queensland University of Technology (QUT), will lead an Australian-first study to establish a national approach to support the developmental needs of children with congenital heart disease and help improve their quality of life.

The $2.99 million, four-year project will build on Children’s Health Queensland’s pioneering model of care for children with congenital heart disease (CHD), known as CHD LIFE, to enable health services across Australia to provide consistent, best-practice neurodevelopmental support for children impacted by CHD.

CHD is one of the most common birth defects in Australia, occurring in around eight newborns per 1,000, and is the biggest single cause of child mortality and early childhood hospitalisation. Nearly one third of infants with CHD require surgical intervention, but many are left with substantial physical, intellectual, psychological and social difficulties.

Children’s Health Queensland’s Queensland Paediatric Cardiac Service director Dr Robert Justo said the CHD LIFE model was designed to empower children and their families affected by, or at risk of, neurodevelopmental complications associated with CHD to access screening, diagnostic assessments and treatments at the right time in their local community.

“Many children with CHD require extra support from health care specialists, such as cardiologists, cardiac surgeons, allied health clinicians, child development experts, paediatricians and primary care experts over long periods of time to help them reach their full physical, mental and social potential,” Dr Justo said.

“Children and their families often have to travel to specialised centres for neurodevelopment assessments and treatments, which can be particularly challenging for families in regional, rural and remote areas, so we developed a de-centralised model of care for our patients at the Queensland Children’s Hospital that incorporates digital solutions like telehealth to improve access to local high-quality health care services.

“We are delighted to partner with QUT, HeartKids, the Children’s Hospital Foundation, and importantly, Australian hospitals and health services which provide care to children who have undergone open-heart surgery to see how we can best scale up this innovative service model in localised settings to support children with CHD from right around the country.”

The study, funded through the Medical Research Future Fund (MRFF), will bring together the Mater Medical Research Institute, Murdoch Children’s Research Institute, Sydney Children’s Hospital Network, Women’s and Children’s Health Network (South Australia), Child and Adolescent Health Service (Western Australia), and Top End Health Service (Northern Territory).

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