The path to wellness in childhood needs to be carefully monitored and measured if it is to be successfully maintained – and this is why Flinders University’s Caring Futures Institute is focusing on important research to improve the methods to assess childhood health-related quality of life. 

Flinders University PhD candidate Diana Khanna, a new Research Associate with the Health and Social Care Economics team within the Caring Futures Institute, has been involved in creating better and more accurate guidelines around the measurement of paediatric health-related quality of life. 

This is part of the QUOKKA Research Program, a three-year Australia-wide program that commenced in 2020 and comprises six extensive projects related to measuring and valuing child health quality of life, funded by the Australian Government’s National Health and Medical Research Council (NHMRC). 

Diana and the Institute team have now completed QUOKKA Project 2: Strengthening self-report and proxy-reported measurement of paediatric Health-Related Quality of Life (HRQoL). 

“This is very valuable in making economic evaluations to assess the effectiveness of health interventions in children and whether they are worthwhile,” explains Diana. “It reaches beyond the clinical outcomes to also measure an individual’s overall wellbeing, and how that was affected by those health interventions.” 

An important focus of the project Diana worked on was assessing younger children who may not be able to clearly express how they feel. “For instance, one child said their pain level was high, and when asked why, they said it was because their mother had taken their iPad away. They had misconstrued this question to relate to their immediate emotional focus.” 

In such instances, parents are often used to report on a child’s health-related quality of life, but often their interpretation may not be accurate. They can clearly explain physical attributes, but not the emotional wellbeing of children. “We wanted to measure what gap exists between these two areas, and how we can narrow that to get more accurate health-related quality of life assessments in young children,” says Diana. 

This meant the researchers encountered difficulty qualifying what age children can start to meaningfully self-report their health-related quality of life. “It can vary, especially for children under 10 years, because some struggle to understand the intention of the questions. This showed to us that the current measures are unable to accurately capture exactly how and what children feel – so the shape of the questions and the questioning process needs to change.” 

The researchers explored a different angle of questioning, asking a parent to put themselves in their child’s shoes rather than just reporting from their own perspective. “Instead of asking how does your child feel today, we asked how your child would respond to the question ‘How do I feel today’, which made the parent provide a more personalised, emotive response. This different perspective gave us different results that provide a more accurate assessment of a child’s health-related quality of life.” 

The sum of this research has been collated within the QUOKKA Research Program, with the findings being assessed beside results from all six projects to contribute to the national guidelines for improved paediatric health-related quality of life measurements. 

This research has also provided the core of Diana’s PhD research that focuses on measuring paediatric health-related quality of life – her thesis currently being examined, is titled “Investigating agreement in Proxy and Self-Reported Health-Related Quality of Life in children for informing Economic Evaluation and Quality assessment ” – and she is confident this will have significant impact on improving the approach to measure the total health and wellbeing of children, along with the cost-effectiveness of successful health interventions. 

“Capturing this information accurately is valuable because it focuses on the quality of health outcomes in children and learning from them whether it is effective or not,” says Diana. “It’s a very important voice that we have to listen to.”