QUT leads study to improve quality of life for children with congenital heart disease

QUT, in partnership with Children’s Health Queensland, will lead a nation-wide study to help health services support the long-term neurodevelopment and quality of life of children with congenital heart disease.

QUT leads study to improve quality of life for children with congenital heart disease

The four-year study has received $2.99 million in funding through the Federal Government’s Medical Research Future Fund, announced by Federal Minister for Health Greg Hunt.

It will be led by Professor Steven McPhail, Director of the Australian Centre for Health Services Innovation (AusHSI), co-director of QUT’s Centre for Healthcare Transformation and part of the Faculty of Health School of Public Health and Social Work, and involves leading clinicians and health service researchers partnering with Australian hospitals and health services which provide care to children who have undergone open-heart surgery.

The Australian Institute of Health and Welfare says congenital heart disease (CHD) affects about 2400 babies born in Australia each year, with about half requiring surgery or catheter-based interventions at some time.

Professor McPhail said children who receive early open-heart surgery benefit from developmental surveillance and may require extra support from health service providers with specialist skills over long periods of time to help them reach their full physical, mental and social potential.

As with most specialized fields of healthcare, screening, diagnosis and treatments for CHD and its associated neurodevelopmental complications have often been centered in or near specialized children’s hospitals.

Children and their families often have to repeatedly travel to these specialized centers, and this can be particularly difficult and potentially disadvantage children and families from regional, rural and remote areas.

De-centralized models of care delivery that take into account digital health innovations, including telehealth, have potential for improving access to CHD neurodevelopment assessments and treatments.

We have seen Children’s Health Queensland’s Queensland Pediatric Cardiac Service, led by Dr Robert Justo, develop and implement the CHD LIFE de-centralized model of care for children with CHD who received surgery at the Queensland Children’s Hospital.

The CHD LIFE model empowers children and their families to access screening, diagnostic assessments and treatments at the right time and right location for them, to help prevent or provide treatment for neurodevelopmental complications associated with CHD.

We are delighted to be partnering together, along with HeartKids, Children’s Hospital Foundation and leading children’s cardiac services across Australia, to see how we can best scale up this service innovation across the country.

Our study will enable health services across Australia to implement developmental surveillance models like CHD LIFE in their local contexts to provide consistent, best-practice neurodevelopmental support for children with CHD and their families.

We want to see these precious children and their families not only have a great quantity of life, but also a great quality of life too.”

Professor Steven McPhail, Director of the Australian Centre for Health Services Innovation (AusHSI), co-director of QUT’s Centre for Healthcare Transformation

Collaborators in the study include Mater Medical Research Institute, Murdoch Children’s Research Institute, Sydney Children’s Hospital Network, Women’s and Children’s Health Network (South Australia), HeartKids, Child and Adolescent Health Service (Western Australia), Children’s Hospital Foundation (Queensland), and Top End Health Service (Northern Territory).  

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