PROJECT 2
Strengthening self-report and proxy-reported measurement of paediatric Health-Related Quality of Life (HRQoL)
Project 2 aims to advance the use of paediatric health-related quality of life (HRQoL) measures by developing and testing promising innovative approaches of allowing younger children (< 8 years) to self-report their HRQoL. Self-reporting in very young children remains a fundamental challenge in measuring HRQoL, so this study will also develop and test ways of strengthening proxy reporting.
Project 2 comprises three sub-studies:
Study 1 is a systematic review of international guidelines for self-report and proxy completion of paediatric quality of life measures
The objectives of this review are to:
• identify and systematically summarise published guidelines and recommendations for completing self-and proxy-reports of preference-based measures used to measure HRQOL in paediatric populations
• determine whether the selected guidelines differ by instrument and child characteristics
• assess the methodological quality of existing guidelines for self-report and proxy completion of paediatric HRQOL instruments
Several databases will be systematically searched.
Study 2 is a mixed-methods study, which will explore the validity of self vs proxy assessment of the health-related quality of life in children
The objectives of the study are to:
• To apply innovative approaches including concurrent and retrospective think-aloud and eye-tracking technology to determine the lower limit (“age threshold” and “cognition threshold”) at which children with health conditions can reliably complete the Child Health Utility (CHU9D), the Paediatric Quality of Life Inventory (PedsQL), and the EQ-5D-Y (3L) self-complete versions on the laptop
• Test the convergence/divergence in HRQoL data by self-report and proxy completion collected using these methods
Mixed methods will be used, incorporating semi-structured interviews, with eye-tracking and think-aloud techniques. Children 5-12 years (n=200) comprising both children with and without various health conditions will be recruited. Three widely used HRQoL questionnaires, including the CHU9D, PedsQL, and EQ-5D-Y (3L), will be used in this study.
Study 3 will apply and test animation, pictorial and easy-read approaches to the assessment of paediatric quality of life
This study consists of a systematic review and empirical research. The objectives of this study are to:
• Identify methods for improved child self-reporting, including easy read, animations, and pictures
• Assess whether existing paediatric HRQoL measures be adapted to include these new methods to facilitate self-completion by younger children
• Assess whether existing paediatric HRQoL measures can be adapted/improved to include these new methods to facilitate convergence in child self-report and proxy completion
N=1,000 children of different ages in the community will be recruited. Two validated paediatric questionnaires, including the EQ-5D-Y and the CHU9D, will be considered for adaptation in this study.
The project is being led by a team of researchers based at Flinders University in collaboration with clinicians at The Women’s and Children’s Hospital Adelaide and researchers at the University of Melbourne and Monash University.