Study raises screening call

Young children with complex congenital heart disease (CHD) and their families face reduced quality of life, according to a study1 by medical researchers from UNSW Sydney and the Sydney Children’s Hospitals Network.

“The findings are striking and highlight the significant challenges children with complex CHD and their families face,” study author from UNSW Medicine Associate Professor Nadine Kasparian said.

Dominique Denniss, a UNSW medicine honours student and another author on the study, said: “Our study included young children aged one to five 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”.

Overall, the study found that many children with complex CHD have meaningful impairments in quality of life when compared with their healthy peers, in particular, regarding their emotional health.

“Our youngest children in the study, aged between one and two years, showed functioning that was below what we might expect in the general population for almost every domain,” Ms Kasparian said.

“For our two to five-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 were able to identify a number of potentially modifiable factors that contributed significantly to a child’s 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.

The study showed similar results for the mothers and key factors causing lower health-related quality of life included difficulties in their family, psychological distress, whether their child had any additional physical conditions, and perceiving their child as having a difficult temperament.

Although the study highlights profound difficulties for young children with heart disease and their families, some real opportunities have been identified, with Ms Kasparian stressing the importance of this as the factors causing difficulty 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.”

Based on their results, the researchers have called for routine screening of health-related quality of life for all children with complex CHD.

“When you find such significant proportions of children with difficulties in domains that are important for the rest of their lives, you need to advocate strongly – across the country – for screening, so that we pick up our most vulnerable children and provide the necessary support as early as possible,” Ms Kasparian says.


  1. Denniss DL, Sholler GF, Costa DSJ, Winlaw DS, Kasparian NA. ‘Need for routine screening of health-related quality of life in families of young children with complex congenital heart disease’. The Journal of Pediatrics, 2018.
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