Improving the way child health is measured and valued in HTA: an update on QUOKKA
MRFF-funded project MRFF1200816, “Quality of Life in Kids: Key evidence for decision makers in Australia” (QUOKKA) is a collaboration between HEU and researchers at the Royal Children’s Hospital, Murdoch Children's Research Institute and Monash, Flinders, UTS and Curtin University. Led by HEU’s Professor Nancy Devlin, QUOKKA comprises a suite of six inter-linked projects which will strengthen the way child health is measured and valued, and to improve the evidence being considered in health technology appraisal of childhood interventions.
Project 1 is a large-scale multi-instrument comparison study, designed in collaboration with clinical partners to test the psychometric properties of a range of instruments in pediatric populations spanning a wide range of conditions and health problems. The data produced from this research will yield a unique and enduring resource for future researchers both in Australia and worldwide. Ethics consent has been obtained and data collection is underway.
Project 2 investigates the way children and their proxies report health on these instruments – an initial study using eye-tracking technology has completed data collection. In our next phase of work we are exploring new ways of strengthening children’s self-reporting of their health problems, using graphics and animations.
Projects 3-5 are exploring various methodological questions about how best to assign values to pediatric health states, using both qualitative and quantitative methods. In addition to methodological advances, this project will culminate in producing an Australian value set for at least one pediatric HRQoL instrument.
Project 6 investigates whether the general public support for prioritising health improvements in children, using both qualitative and quantitative methods.
QUOKKA’s work is informed by a Decision Maker’s Panel; a Consumer Advisory Group; and regular engagements with the Department of Health. We are also working closely with the TORCH research programme led by ANU to undertake a series of systematic reviews on pediatric health.
QUOKKA’s website: https://www.quokkaresearchprogram.org