Research conducted by experts at The Children's Hospital at Westmead and The University of New South Wales has found that families affected by heart disease had poorer mental health outcomes compared with the general population.
The study, published today in The Journal of Pediatrics is the largest of its kind and looked at the quality of life in children and families affected by complex Congenital Heart Disease (CHD).
Associate Professor Nadine Kasparian of UNSW Medicine said the findings highlighted significant challenges children with heart disease and their families face.
The study looked at children aged between 1 and 5, all of whom had undergone at least one heart operation and then examined theirs and their mothers physical, emotional, social and cognitive health.
“Our youngest children... aged between 1 and 2 years, showed functioning that was below what we might expect in the general population... For our 2-5-year olds, we found one very striking result – emotional functioning was, on average, more than 10 points below what we might expect to see for healthy children the same age. That's an important difference”, A/Prof Kasparian says.
The results were very similar for mothers, who also demonstrated poorer mental health outcomes.
While the study highlights profound difficulties for young children with heart disease and their families, A/Prof Kasparian said these factors can potentially be addressed.
“We now have a roadmap showing us what we can do to make a difference for these children and their families – we now know what avenues there are for better care and support. For example, if maternal psychological stress is playing a role in influencing quality of life, there are evidence-based interventions and supports we can offer that can make a difference." she said.
“There are also ways we can nurture the developing relationship between sick babies and their parents to improve overall quality of life.” A/Prof Kasparian said.
Based on their findings, the researchers are now calling for routine screening of health-related quality of life for all children with complex CHD, so they don’t continue to fall through the cracks.