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A number of papers by members of the QUOKKA team, reporting new evidence and tools for the measurement and valuation of childrens’ health related quality of life, will be presented  at the 2022 Scientific Plenary meeting of the EuroQol Group, to take place in Chicago in September.

Two of the papers represent report first findings from QUOKKA’s landmark Pediatric Multi-Instrument Comparison (P-MIC) study, the first study of its kind internationally.  The protocol for P-MIC can be found here, and a technical paper providing further detail is also now available on the QUOKKA website. A wide range of measures of pediatric HRQoL were included in the study, across nine disease areas; the plenary papers focus mainly on reporting evidence on EuroQol instruments.

The first of these papers, by Jones et al (2022), is The Australian P-MIC study: data quality, feasibility, acceptability and descriptive comparison of the EQ-5D-Y-3L, EQ-5D-Y-5L, TANDI and PedsQL.

A second P-MIC paper at the plenary is by Bahrampour et al (2022), What does the EQ-5D-Y-5L measure in comparison to other generic pediatric health related quality of life instruments? A dimensionality assessment using Factor Analysis.

A further paper from the QUOKKA team, by Khanna et al (2022), reports an experiment comparing reports of child health by child and parent dyads, and use of a deliberative approach to reconciling differences between self- and proxy-report: Let us talk: A deliberative approach to improve inter-rater agreement in the assessment of Health-Related Quality of Life in children.

The QUOKKA research team have two further papers and a poster at the plenary, on topics relating to the methods for valuing child HRQoL. Pan et al (2022) report on Using DCE based approaches to value EQ-5D-Y-3L in Australia, drawing on data from an ongoing study led by Richard Norman to produce an EQ-5D-Y-3L value set for Australia.  This paper by Pan et al is the first to report values for pediatric HRQoL produced from the use of DCE variants including dead or duration attributes. Yang et al (2022) report evidence from use of a ‘parental TTO’ and lag-time TTO in comparison with the composite TTO usually used to value EQ-5D-Y-3L, in their paper Testing two alternative TTO methods for valuation of EQ-5D-Y health states by trading life years in adulthood.  Luo et al (2022) report the results of their review on How have qualitative methods been used to understand the valuation of preference-based measures?  A scoping review in their poster to be presented at this meeting.

Finally, Bailey at al (2022) present a paper: Values for child health related quality of life: a checklist for studies reporting the elicitation of stated preferences. This paper is a joint output from QUOKKA and another Australian research team, TORCH. While checklists exist for adult HRQoL values, this paper reports the first checklist focusing on pediatric HRQoL values.

The annual plenary meeting of the EuroQol Group aims to provide a forum for discussion of work on progress. Feedback provided by the discussants and plenary participants on these papers will be used to further strengthen them before being submitted to journals.

Abstracts for each of the papers mentioned above are provided below.

Further information about QUOKKA can be found on our website. Keep up to date with QUOKKA research outputs by folowing us on twitter @QUOKKA_Research

Enquiries about these papers or any aspect of QUOKKA’s work may be directed to Professor Nancy Devlin