Generating a comprehensive database of patient-level data to understand the performance of alternative paediatric Health-Related Quality of Life (HRQoL) measures.
Quality of Kids Lives Study – Finding the best way to measure kids’ health
Each year, researchers and doctors work to find better tests, treatments, and services for children. They often use questionnaires that ask about a child’s general health (also called ‘health related quality of life’) to understand how these tests, treatments and services improve children’s lives. However, sometimes this can be hard as there is a lack of sound evidence on how well these health related quality of life (HRQoL) questionnaires perform in children. More evidence on the performance of these questionnaires is required in Australia to guide decision making. We hope the results of this work may help us to better measure overall health in children in order to provide better health care to children in the future.
This project will compare lots of different HRQoL questionnaires in children (sometimes called a ‘multi-instrument comparison study’). We will test the following questionnaires: Global Health Measure, Child Health Utility (CHU9D), Pediatric Quality of Life Inventory (PedsQL), EQ-5D-Y (3L and 5L), EQ-5D-5L, Toddler and Infant (TANDI), Assessment of Quality of Life (AQoL), Patient-Reported Outcome Measurement Information System (PROMIS), Health Utilities Index 2 (HUI2) and disease specific QoL questionnaires. The study will involve an initial and follow-up survey. The follow-up survey will be a simplified version of the initial survey that will be sent out two weeks after completion of the first survey. The performance of these various child HRQoL questionnaires will be analysed and compared. We will also look at a subset of disease groups to see how generic HRQoL questionnaires perform compared with disease-specific questionnaires. We plan collect data on 4,900 Australian children (from children who are well through to those that are very sick).
The objectives of the study are to:
• Understand how well various child HRQoL questionnaires can be filled out by parents and how well they measure problems and improvements in health (i.e. acceptability, feasibility, reliability, responsiveness, validity and sensitivity).
• Provide government, health practitioners and researchers with a practical set of tools that are ‘fit for purpose’ in judging the effectiveness and cost effectiveness of child health interventions.
The project is being led by a team of researchers based in the University of Melbourne and Murdoch Children’s
Research Institute (MCRI), in collaboration with doctors at The Royal Children’s Hospital (RCH) and researchers at University of Technology Sydney (UTS).
Renee Jones, Brendan Mulhern, Nancy Devlin, Harriet Hiscock, Kim Dalziel on behalf of QUOKKA (Quality of Life in Kids: Key Evidence for Decision Makers in Australia), An Australian paediatric multi-instrument comparison (P-MIC) study protocol for measurement of paediatric health-related quality of life, 20-minute presentation at the 2021 Australian Health Economics Society (AHES) Conference.