Research Partnership with HeartKids for CHD LIFE+

An interview with Holly Williams, HeartKids

Consumer partnerships are extremely important to health services research. Ultimately, consumer participation leads to better understanding of what outcomes matter most to patients and their families and so to improved service design, quality and delivery.

The Australian Centre for Health Services Innovation (AusHSI) is therefore delighted to be partnering with HeartKids (alongside other state and national partners*) in the Congenital Heart Disease Long-term Improvements in Functional Health (CHD LIFE+) project. This project will evaluate existing and co-design potential models of care for CHD neurodevelopmental support to inform future practice.

Here we interview Holly Williams, Queensland State Manager, HeartKids (pictured), to find out why this project is important to children and their families living with Congenital Heart Disease (CHD) and how HeartKids will be involved.

Please tell us a little bit about HeartKids?

At HeartKids, we are the only national charity dedicated to supporting Australians of all ages impacted by Congenital Heart Disease, the leading cause of infant death in Australia and a complex chronic disease requiring lifelong treatment. Our purpose is to help every child, teenager and adult in Australia with CHD have a fighting chance to live a long, healthy and fulfilling life.

In brief terms, what is the long-term impact of Congenital Heart Disease on children and their families?

Children who have Congenital Heart Disease can experience developmental difficulties into adulthood. The challenges they face can affect their ability to achieve their potential educationally and at work, impacting their quality of life.

However, these challenges are often hard to identify in early childhood and our experience is that it is hard for parents and carers to know how and when to access specialised support. We have learnt that these services often seem inaccessible to families in terms of costs or logistics.

Why is HeartKids contributing to this research?

HeartKids strongly believes in the strength of health professionals and consumers working together and driving health sector innovation through research and evidence.

For years, cardiac services around the world have been developing and implementing programs to support the long-term neurodevelopmental needs of children with CHD.

The CHD LIFE+ program of research seeks to systematically use information from one such program, the Queensland-based CHD LIFE model of care, to better understand, develop and apply new models of long-term neurodevelopmental care tailored to the needs of paediatric cardiac services in Australia. It will examine and compare the models of care being implemented in Australia and internationally, including Queensland’s CHD LIFE.

What does HeartKids’ role as the consumer partner investigator involve?

As the study’s key consumer partner, HeartKids will be critical to leveraging families’ involvement in the important co-design phase in 2023-2024. This will include family-centred advocacy and input into the design of, and planning for, local models of care across Australia.

Our involvement in this research project aligns with the goals of the National Strategic Action Plan for CHD and especially its focus on developing standards of care including world first neurodevelopmental and mental healthcare standards. Australia has never had nationally agreed standards of care for CHD. Such standards are an important factor in the provision of seamless congenital cardiac care pathways.

HeartKids contribute to the dissemination of study findings through our state, national and international networks. This will support the development of better local options ensuring real benefits and increase the availability of quality, relevant information about the impact of CHD on children and their families.

It is so motivating to be participating in this valuable research which will have structural results and will make a long-term difference to the lives of so many Congenital Heart Disease families across the country.

Find out more about the CHD LIFE+ research project.

The CHD LIFE+ project partnership includes QUT, the Queensland Paediatric Cardiac Service, Children’s Health Queensland and other national partners.