Our Project

Here in Australia and internationally we already have robust economic and health technology assessment tools that help inform Government decisions about which medicines and medical services are publicly funded. This includes comparing the costs and benefits of different medicines, where benefits are often measured in terms of improvements in length of life and quality of life, captured in the metric of ‘Quality Adjusted Life Years’ (QALYs). But these metrics have been designed predominantly for adults.

Policymakers identified this gap, and funding was awarded by the Australian Government Medical Research Futures Fund (MRFF) to our interdisciplinary team for a research program to develop and refine methods to measure and value child health, and then to use those methods to generate empirical values to inform policy. This research program is known as the Tools for Outcomes Research to Measure and Value Child Health (TORCH) study.

The TORCH study is designed to address two main overarching research questions:

(i) How to value changes in child health for economic evaluation?

(ii) How do QALYs for child populations compare with QALYs for adult populations?

The study utilises a portfolio of available data sources—including a unique database of published studies, ongoing clinical trials, and existing cohort studies—complemented by the generation and analysis of qualitative and quantitative primary data to address the research questions.

The study involves meaningful collaborations between researchers, policymakers, clinicians, child health organisations, and importantly, young people, to co-design the research. These collaborations will ensure that research outcomes are fit-for-purpose and enable knowledge exchange between researchers and policymakers.

The diagram below summarises the work packages planned to address our two research questions.

Work Packages

Work Packages 1-7 address the first broad research question on valuing changes in child health for economic evaluation. The first five work packages are design to explore the strengths and weaknesses of existing health related quality of life instruments to measure health. Based on the evidence generated

Work Package 1

Systematic Review of Conceptual, Age, Measurement and Valuation Considerations for Generic Multidimensional Childhood Patient-Reported Outcome Measures

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Work Package 2

Systematic Review of the Psychometric Performance of Generic Childhood Preference-Based Health-Related Quality of Life Measures

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Work Packages 3 to 5

Strengths and Weaknesses of Existing Instruments in Cohorts and Trials

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Work Package 6

Structured Review of Valuation Methods for Child Health States

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Work Package 7

Method and Valuation Study

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Work Package 8

Synthesis of Evidence on Child and Adult Utility Values for Change in Child Health and Age-Related Weighting within Health Economic Evaluation

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Work Package 9

Social Value of Child QALY—Qualitative Exploration of Whether Child QALY Gains are of Similar Values to those of Adults

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Work Packages 10

Social Value of Child QALY—Stated Preferences

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Work Package 11-12

Social Value of a Child QALY – Revealed Preferences

Exchange Rates Between Child and Adult Population Descriptors and Values of Child Health

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Knowledge Exchange

The TORCH study will hold three Knowledge Exchange exercises, involving key stakeholders at key points in our program of research. The purpose of our knowledge exchange exercises is to ensure meaningful involvement of consumers, health service partners and other end users; co-design and creation of research to ensure the outcomes are ‘fit-for-purpose’; early peer review of findings; and timely delivery of actionable tools and findings over the course of the study.

This first Knowledge Exchange exercise will focus on understanding stakeholder views on characteristics of childhood health-related quality of life instruments for health economic evaluation.