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14 Nov 2018

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.

A study by medical researchers from UNSW Sydney and the Sydney Children’s Hospitals Network has identified a number of potentially modifiable factors that contributed significantly to child quality of life.

 The paper – the largest Australian study on the quality of life in young children with complex congenital heart disease (CHD) – was recently published in the Journal of Pediatrics.

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

The 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,” said 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 one and two years, showed functioning that was below what we might expect in the general population for almost every domain,” Professor 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 study found that feeding difficulties and mothers’ levels of psychological stress played an important role for children’s quality of life.

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.

The results were similar for mums, with key factors for lower health-related quality of life being difficulties in their family, psychological distress, whether their child had any additional physical conditions, and perceiving their child as having a difficult temperament.

While the study highlights profound difficulties for young children with heart disease and their families, it is also important because 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,” Professor Kasparian said.

“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.

“Similarly, with feeding difficulties, there are things that we can do in hospital and in the community to help our babies with feeding difficulties.

“There are also ways we can nurture the developing relationship between sick babies and their parents to improve overall quality of life.”

Based on their results, the researchers call 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. They also make a series of recommendations for improving clinical practice and health policy.

Congenital heart disease is any structural abnormality of the heart that babies are born with – some are diagnosed in utero, and some soon after birth. CHD affects about 1 in 100 newborns, or about 1.35 million babies each year around the world.

Australia’s first National Childhood Heart Disease Action Plan was announced in February this year, and is currently in public consultation phase.

Published: 14 Nov 2018