Scientists at the Heart Research Institute (HRI) have unexpectedly uncovered an additional 15,000 more people living with congenital heart disease (CHD) across Australia than previously thought and it could have repercussions for future funding models.
The discovery was made at completion of the first-tier data collection for the Australian New Zealand Congenital Heart Disease Registry, the first of its kind CHD Registry in the world, to help improve the lives of people living with the condition, and their families.
Eight babies are born in Australia everyday with CHD - a problem with the heart’s structure which can lead to abnormal heart rhythms, blue-tinted skin, shortness of breath, difficulty feeding and/or swollen body organs with serious cases occasionally requiring a heart transplant.
Professor David Celermajer AO has led the development of the world's biggest CHD registry
“We set up the National CHD Registry to help doctors and researchers better understand the disease, track its prevalence, the burden on the health system and the outcomes of people living with the condition, but what we didn’t expect was to find at least ten thousand more patients living with the disease that weren’t being counted,” said HRI Director of Clinical Research and CHD Registry Chairman, Professor David Celermajer AO.
The Australian Institute of Health and Welfare estimates 65,000 children and adults live with congenital heart disease – but Professor Celermajer and his team have already gathered data on over 80,000 individuals.
“We’ve created an invaluable resource that will transform patient care and healthcare planning in Australia and we believe an additional 50,000 CHD patients could remain unaccounted for."
“We know that children with CHD receive superb care, but as they become teenagers more than half get lost in the system when their care is transferred from a children’s hospital to an adult one,” said Professor Celermajer.“Some teenagers can be in denial about their condition and not wanting to feel they need ongoing medical support,” he said. “The registry offers a detailed picture of CHD patients like we’ve never seen before, highlighting key insights into their location, health challenges, social needs and access to care.
Heat map of Australia shows the number of CHD patients included in the Registry
“Before the 1960s, children with CHD rarely survived to adulthood. Now, we have an expanding generation of adults with CHD, and the healthcare system is struggling to keep up.”
“Our data shows patients under the care of specialists have death rates that are significantly lower than those managed by general cardiologists,” said Professor Celermajer.
For adult CHD patients like Clarissa Pitsikas, who is also a patient of Professor Celermajer's, the information provided by the Registry and life-saving research is vital.
"It actually took doctors a long time to diagnose me as a baby," said the 44-year-old Sydney woman. "There wasn’t the same level of awareness or treatment for CHD back then."
"CHD is a lifelong illness with no cure - and it impacts on every aspect of life."
Researchers will now link their collected data to major national databases, including the National Hospital System, the Pharmaceutical Benefits Scheme (PBS) and even the National Death Index to allow them to analyse, healthcare usage, patient outcomes, and treatment pathways at an unprecedented scale. With geolocation data also now available, researchers will be able to determine the best placement of medical services to ensure patients receive specialised care close to home, wherever that might be.
“This is a growing patient population, and we are learning more about them every day,” Professor Celermajer concluded.
