Project Description

Congenital Heart Disease Long-term Improvements in Functional Health+ (CHD LIFE +)

Synopsis

Why the research project is important

Children with Congenital Heart Disease (CHD) are at elevated risk of neurodevelopmental challenges, developmental delays and other learning, psychosocial and behavioural difficulties.

The Congenital Heart Disease Long-term Improvements in Functional hEalth (CHD LIFE) model of care, developed and led by clinicians from Children’s Health Queensland, has empowered high-risk children and their families to access the right surveillance, evaluation and treatments in the right location for their circumstances and at the right time for optimal prevention and treatment for neurodevelopmental complications.

What the research seeks to do

The CHD LIFE+: family centred care models supporting long-term neurodevelopment program of research will build upon the existing CHD LIFE model of care in Queensland to manage neurodevelopment surveillance and support of children with congenital heart disease after surgery around Australia. It will develop advanced simulation models, tailored for each Australian jurisdiction, for alternative models of care that are intended to support neurodevelopment, including the CHD LIFE model.

What are the research outcomes/ impact

This program of research aligns with Priority Area 4 (Neurodevelopment and Mental Health Care) of the National Strategic Action Plan for Childhood Heart Disease, and contributes strongly to Focus Areas 1, 2, 3, 5, 6 and 7 in helping establish accessible, patient-centred and sustainable, best-practice neurodevelopmental and mental-health-related models of care for children with CHD and their families.

It will enable benefits through future use and adaptations of each jurisdictional health services statistical/computational model.

Funding Body

This program of research is funded through an MRFF Congenital Heart Disease Grant (ARGCHDG0035) 2020-2024.

QUT

Academic Lead – Professor Steven McPhail

Prof William Parsonage

Dr Sanjeewa Kularatna

Professor Adrian Barnett

Dr Nicole White

Dr Bridget Abell

Dr Sanjeewa Kularatna

Children’s Health QLD

Clinical Lead – Professor Rob Justo

Dr Ben Auld

Ms Karen Eagleson

Dr Kerrilyn Webb

A/Prof Nelson Alphonso

Dr Prem Venugopal

CHD LIFE team

Child and Adolescent Health Service

Dr Stephen Shipton

HeartKids Limited

Ms Holly Williams

Mater Medical Research Institute

A/Prof Sam Bora

Murdoch Children’s Research Institute

A/Prof Michael Cheung

Dr Julia Charlton Gunn

The Sydney Children’s Hospitals Network

Prof Gary Sholler

A/Prof Nadine Kasparian

Top End Health

Dr Bo Remenyi

Women’s and Children’s Health Network Incorporated, South Australia

Dr Andrew Kelly

Partners

Children’s Hospital Foundation