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

Synopsis

Why the research project is important

CHDLIFE+ Team at QCHCongenital Heart Disease is one of the most common conditions for children to be born with, affecting one in a hundred live births. Unfortunately, children born with the condition are at higher risk of neurodevelopmental challenges, developmental delays and other learning and behavioural difficulties. These challenges can be mild but affect multiple areas of development and new issues can emerge over time.

More recently, clinicians from Children’s Health Queensland have developed care pathways for children with Congenital Heart Disease, called CHD LIFE, to help them overcome developmental obstacles and improve their functional health.

CHD LIFE+ is a research project that seeks to systematically use information from the CHD LIFE care pathway to better understand, develop and apply new models of long-term neurodevelopmental care.

What the research seeks to do

The CHD LIFE+ program of research will evaluate existing and potential models of care for CHD neurodevelopmental support, nationally and internationally, to inform future practice.

The program will test simulated models of care for suitability across the country and identify which models fit local need. Investigators will work with study partners, families, and services to co-design and cost models of care to identify best practice long-term neurodevelopmental care options for their jurisdiction.

Leading the program are researchers at the Australian Centre for Health Services Innovation (AusHSI), QUT, in partnership with Queensland Paediatric Cardiac Services, Children’s Health Queensland and national partners.

What are the research outcomes/ impact

This program of research will help establish accessible, family-centred, sustainable and best-practice neurodevelopmental and mental-health-related models of care for children with CHD and their families.

It will archive information on the best adaptable care models for future use, providing families and health services with long term benefits.

The program’s partnerships with leading paediatric organisations across Australia will enable far-reaching data and impact.

Funding Body

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

QUT

Academic Lead – Professor Steven McPhail

Professor William Parsonage

Professor Adrian Barnett

Associate Professor Sanjeewa Kularatna

Dr Nicole White

Dr Bridget Abell

Ms Jenna English

Children’s Health QLD

Clinical Lead – Associate Professor Rob Justo

Dr Ben Auld

Ms Karen Eagleson

Dr Kerri-Lyn Webb

Associate Professor Nelson Alphonso

Associate Professor Prem Venugopal

CHD LIFE team

Child and Adolescent Health Service Western Australia

Dr Stephen Shipton

Dr Cameron Seaman

HeartKids Limited

Ms Holly Williams

Mater Medical Research Institute

Associate Professor Sam Bora

Murdoch Children’s Research Institute

Associate Professor Michael Cheung

Dr Julia Charlton

The Sydney Children’s Hospitals Network

Associate Professor Gary Sholler

Associate Professor Nadine Kasparian

Top End Health

Dr Bo Remenyi

Dr Simone Martin

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

Dr Andrew Kelly

Partners

Children’s Hospital Foundation

PICTURED ABOVE (L-R): Karen Eagleson, A/Prof Sanjeewa Kularatna, Dr Sameera Senanayake, Dr Ben Auld, A/Prof Rob Justo, Jenna English, Dr Bridget Abell, Prof Steven McPhail, Queensland Children’s Hospital

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