Routine HRQOL screening for families of children with congenital heart disease

Young children with complex congenital heart disease should be routinely screened for health-related quality of life outcomes, say researchers who found the disease takes a huge psychological toll on patients and their families.

In what is the largest Australian study of its kind, researchers from the University of NSW and the Sydney Children’s Hospitals Network assessed the physical, emotional, social and cognitive health of 87 children aged one to five with either single ventricle CHD or CHD requiring neonatal biventricular repair.

Their findings, published in the Journal of Pediatrics, identified that many of the children had meaningful impairments in quality of life compared to 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,” said study author Associate Professor Nadine Kasparian, Head of Psychology at the Heart Centre for Children, University of NSW.

“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 also found that mothers’ quality of life was also impaired, particularly in terms of psychological stress.

The team identified a number of potentially modifiable factors that contributed significantly to children’s poor quality of life, such as feeding difficulties and mother’s psychological stress.

Meanwhile, key factors for lower health-related quality of life in mothers included psychological distress, whether their child had additional health conditions, and perceiving their child as having a difficult temperament.

The findings offer a “roadmap” for clinicians and policy makers to provide better care and support to families of children with complex CHD, 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.

She also pointed to the need for routine screening of health-related quality of life for all children with complex CHD, which affects about one in 100 newborns.

“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’re picking up our most vulnerable children and providing supports as early as possible,” Professor Kasparian said.

However there is no ‘one size fits all’ approach for screening, she added.

“In some cases, it might mean starting by asking families to complete a measure of quality of life – well before their baby’s discharge from hospital – and then making a plan together for accessing the supports that are needed and wanted.”

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