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Ninety per cent of children born with congenital heart disease (CHD) are surviving to adult life. Recently, the characteristics of this population have been changing, as advances in medical practice are allowing people with CHD to live longer.

While these advances have helped to increase life expectancy, they have also created challenges for those providing healthcare to adults with CHD. As these patients age, they are prone to medical complications such as arrhythmia, heart failure, endocarditis, reoperations and occasionally, premature disability or death.

It is critical that regular expert surveillance is maintained in order to manage the condition and prevent or treat serious complications in the future. Unfortunately, many adults with CHD are not currently receiving this expert care.

As this “older” CHD population is relatively new, we do not have the evidence of “life experience” with CHD to develop effective strategies for delivering the best clinical care. Our previous research has outlined barriers that are preventing patients from accessing appropriate CHD care. For example, this includes teenagers and young adults transitioning from child to adult care, rural and remote CHD patients who must travel long distances to receive care, and a high prevalence of psychological and social disadvantage within this adult CHD population.

This lack of “health systems” knowledge is preventing the development of adequate care strategies for this population. This project aims to acquire such information, enabling further research that will drive new care strategies that will improve patient wellbeing and ease the burden on the health system.

We will be engaging young adults aged 18–28 years and their parents to be involved in a comprehensive profiling of health outcomes and wellbeing – social, financial and psychological. We will also be engaging these patients in “consumer driven” research, with these young adults providing consultation to researchers on how they would like to receive care and their current experiences of the care system.

This type of project has not been done elsewhere, and so has the potential to be a ‘world first’.

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