Experts are calling for national mental health care standards to help address the significant emotional toll faced by the 65,000 Australians living with congenital heart disease.
More than 2,400 Australian babies are born each year with congenital heart disease (CHD). The effects of the disease during infancy can be far-reaching, with children having an increased risk of neuro-developmental impairment and difficulties with emotional and behavioural regulation.
Writing in this week’s edition of the Medical Journal of Australia, UNSW Associate Professor Nadine Kasparian and colleagues from UNSW and The Children’s Hospital at Westmead said that although advances in medicine have drastically improved the disease’s survival rate, they bring a range of new challenges.
These include complex treatment choices and the need to transition from paediatric to adult cardiac services.
“Embedded in each of these challenges are a range of psychological complexities, foremost of which is how to best support the wellbeing of people with CHD across a lifetime,” the authors wrote.
Diagnosis of a life-threatening illness during a child’s formative years can have far-reaching effects that ripple through the family and across a lifetime.
“Diagnosis of a life-threatening illness during a child’s formative years can have far-reaching effects that ripple through the family and across a lifetime.”
Issues can develop further in adulthood, with heart failure, recurrent strokes and other cardiac problems increasing the vulnerability to neurocognitive impairment in adults with CHD.
“Studies using clinical interviews have found that one in three adults with CHD report symptoms of anxiety or depression warranting intervention. The vast majority of these adults go untreated.”
The authors recommend the formation of multidisciplinary working groups to develop national standards of mental health care in CHD and for more research to understand the difficulties that families experience, including increased risk of postnatal depression, anxiety and post-traumatic stress in parents of babies with CHD.
“To transition congenital heart disease to ‘congenital heart health’, equal emphasis must be placed on both physical and mental health so that the successes in physical care are not undermined by the absence of adequate emotional care,” the authors wrote.