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 prestigious 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.”
The results were similar for mothers, 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, A/Prof Kasparian says it’s also really 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.
“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.
“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,” A/Prof Kasparian says.
“When it comes to screening, there’s no ‘one size fits all’ approach. 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.”
A/Prof Kasparian says it is important to focus on these kids because early childhood is a critical time for so many aspects of development.
“In our field, there have been very few studies focusing on young children. Much of the evidence that informs our clinical decisions is based on older children, so this study sheds much-needed light on our younger children’s experiences and needs,” she explains.
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. A/Prof Kasparian’s team leads the neurological and mental health charter of the Action Plan, and her team is also a finalist in the NSW Health Innovation Awards for ‘excellence in the provision of mental health services’.
A/Prof Kasparian also recently won the prestigious 2018-19 Harkness Fellowship in Health Care Policy and Practice, allowing her to spend a year at Harvard Medical School and Boston Children's Hospital working with the world’s top health policy experts.
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: In Press.
Associate Professor Kasparian’s research is funded by competitive grants from the National Heart Foundation of Australia, HeartKids Australia, the National Health and Medical Research Council (NHMRC) of Australia, The Commonwealth Fund (United States), and other funding and donation partners.