Congenital heart disease care gap revealed as more kids survive

A new report on congenital heart disease in Australia has highlighted that improved survival in infants comes with a duty of care to provide for those patients into their adulthood.  

The AIHW report estimated about 2,400 babies are affected in Australia each year. Ventricular septal defect was the most commonly reported congenital heart disease followed by atrial septal defect and patent ductus arteriosus. 

However congenital heart disease deaths for children under five years have dropped over the last 30 years from 15.1 to 4.8 per 100,000. 

“People with congenital heart disease are, on average, living longer. The decline in congenital heart disease mortality rates is reflected in an increase in the mean age of death of persons, where congenital heart disease was either an underlying or associated cause of death,” the report said. 

“The mean age of death for these persons increased from 23.3 years in 1997, to 28.2 years in 2007 and 30.4 years in 2017.”

The report said there were an estimated 26,000 – 32,000 adults with congenital heart disease in Australia in 2011, and increasing at about 5% per year. 

“Advances in paediatric cardiac care mean that people with congenital heart disease are now living longer, and the burden of disease is shifting from early childhood into the adult population.” 

“Patients with complex and severe congenital heart disease will continue to require specialist treatment throughout their life.”

Scandrett Professor of Cardiology at the University of Sydney Professor David Celermajer told the limbic the facilities and resources to look after young adults with congenital heart disease hadn’t kept pace with their numbers. 

“So there is now a very, very substantial care gap in tens of thousands of young adults with congenital heart disease who have had enormous emotional, financial, social and medical input up until the age of 18 and then disappear and aren’t looked after well.”

“The vast majority of them are going to have long term needs and in many of them the needs are mental health, psychosocial, neurodevelopment, poor job outlook and welfare dependency as well as physical limitations.”

A survey of people living with congenital heart disease, published earlier this year and co-authored by Professor Celermajer, found close to half reported not being formally transitioned from paediatric to adult cardiology care.

And a substantial majority (71%) reported recent feelings of anxiety, worry or depressive thoughts related to their congenital heart disease. 

Professor Celermajer acknowledged that similar issues were also occurring in other populations such as people with cystic fibrosis and diabetes. 

“…all these success stories from paediatrics but we haven’t kept pace with providing for them when they are young adults.”

“So it is a major issue that has not yet been properly addressed but there are many people trying to see that it gets addressed.”

The AIHW report said there were about 5,000 hospitalisations for congenital heart disease in 2016-17 and 2,700 surgical procedures for closure of defects.

There were more than 10,000 hospitalisations across all age groups where congenital heart disease was an additional diagnosis. 

Congenital heart disease was listed as the underlying cause of 152 deaths in 2017 and an associated cause of death in 298 deaths during 2015-17.

An estimated $199.5 million was spent on the diagnosis and treatment of cardiovascular defects in 2015-16.

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