Work Packages 3–5 aim to provide additional evidence on the strengths and weaknesses of different health-related quality of life instruments for use with children. Evidence will be gathered from instruments used in existing cohorts (Work Packages 3 and 4) and clinical trials (Work Package 5) in Australia and overseas.
Work Package 3 uses population level data form the Longitudinal Study of Australian Children, to investigate psychometric properties of the CHU9D and the PedsQL in the measurement of quality of life for children and adolescents with a range of paediatric health conditions, including obesity, epilepsy, ADHD and depression.
Work Package 4 provides data from existing and new cohort studies on the strengths and weakness of measures in different clinical populations. KCAD, a cohort study of children with chronic kidney disease (including CKD, dialysis and transplant), includes the HUI-3, and examines the relationship between HUI and parental reported health, and other clinical measures. A new cohort study in collaboration with Neurodevelopment Australia includes multiple instruments including the EQ5D-Y, CHU9D and the PedsQL, as well as other clinical measures, administered to assess quality of life for children with neurodevelopmental conditions. The PedsQL is also being administered to participants in the Baby1000 cohort. The inclusion of these measures will help inform Work Package 7 and contribute to the evidence base on reliability, validity and responsiveness of measures in particularly clinical populations.