Work Package 3-5
Strengths and Weaknesses of Existing Instruments in Cohorts and Trials
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.
Work Package 5 uses the NAVKIDS2 multi-centre Randomised Controlled Trial (RCT) to evaluate psychometric properties of both HUI-3 and PedsQL. The NAVKIDS2 trial is a multicentre RCT assessing the health benefits of a patient navigator program in children with chronic kidney disease including those not requiring dialysis, on dialysis and with kidney transplants, from a low socioeconomic backgrounds and/or living in rural/remote areas.
The inclusion of PedsQL into the RCT by TORCH will help inform Work Package 7 and add to the evidence base on the reliability, validity and responsiveness of PedsQL in a particularly vulnerable group of children. Similarly, the trial data provides a unique opportunity to evaluate the strengths and weaknesses of HUI-3 and PedsQL in evaluating the effects of an intervention aimed at addressing social determinants of health. NAVKIDS2 has completed recruitment and is in the final six months of follow-up.
Findings from these three Work Packages will be combined with findings from the two systematic reviews (Work Packages 1 and 2), providing a robust evidence base regarding the strengths and weaknesses of Health-Related Quality of Life instruments for use in child populations.
Publications from these work packages are as follows:
Reliability, acceptability, validity and responsiveness of the CHU9D and PedsQL in the measurement of quality of life in children and adolescents with overweight and obesity, published in the International Journal of Obesity.
Psychometric Evaluation of the PedsQL GCS and CHU9D in Australian Children and Adolescents with Common Chronic Health Conditions, published in Applied Health Economics and Health Policy.
Longitudinal associations between socioeconomic disadvantage and overall health of children with chronic kidney disease and their carers, published in Pediatric Nephrology.
Baseline characteristics of participants in the NAVKIDS2 trial: a patient navigator program in children with chronic kidney disease, published in Pediatric Nephrology.
