A perspective published in Medical Journal of Australia has called for national standards to be developed for mental health care in congenital heart disease (CHD) to help address the significant emotional toll of diagnosis and treatment.
More than 2400 Australian babies are born each year with CHD, with an estimated 65 000 adults living with the disease.
Associate Professor Nadine Kasparian and colleagues from The Children’s Hospital at Westmead and the Universities of New South Wales and Sydney wrote that although advances in medicine have drastically improved the survival rate, they bring a range of new challenges including 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 effects of CHD during infancy can be far-reaching, with children having an increased risk of neurodevelopmental impairment and difficulties with emotional and behavioural regulation.
“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,” the authors wrote.
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 recommended 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.