A study by medical researchers from UNSW Sydney and the Sydney Children’s Hospitals Network has shown that young children with heart disease and their families may have poorer quality of life than the general population, leading to calls for routine screening to enable early intervention and better outcomes.
The paper – the largest Australian study on the quality of life in young children with complex congenital heart disease (CHD) – was published today in the Journal of Pediatrics.
“The findings are striking and highlight the significant challenges children with heart disease and their families face,” says study author Associate Professor Nadine Kasparian from UNSW Medicine.
“Our study included young children aged 1-5 years, all of whom had undergone at least one heart operation. We examined their and their mums’ physical, emotional, social and cognitive health, using a well-established quality of life measure,” says Dominique Denniss, a UNSW Medicine Honours student and author on the study.
“We looked at quality of life from a multi-dimensional perspective, taking into account a whole range of factors that can influence a child’s sense of wellbeing.”
Overall, the study found that many children with complex CHD have meaningful impairments in quality of life, compared to their healthy peers – especially when it comes to their emotional health.
“Our youngest children in the study, aged between 1 and 2 years, showed functioning that was below what we might expect in the general population for almost every domain,” A/Prof Kasparian says.
“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.”
The team identified a number of potentially modifiable factors that contributed significantly to child quality of life.
“We found that feeding difficulties and mums’ level of psychological stress played an important role for children’s quality of life,” Ms Denniss said.
“Additional factors were having the most complex form of congenital heart disease (functional single ventricle CHD) or having another health condition in addition to heart disease.”