ISSUE:

The issue to be presented and debated is the current status of existing generic preference-accompanied measures of HRQoL for use in the self and proxy report of paediatric HRQoL, and the extent to which they are fit for purpose for HTA. This includes discussion of current evidence about the instruments and where further evidence is required to guide the use of the instruments in decision making.

OVERVIEW:

Measuring HRQoL in paediatric populations is challenging, resulting in substantial gaps in evidence submitted to HTA bodies around the world. There are a range of generic measures of HRQoL, including the EQ-5D-Y, EQ-5D-Y-5L, CHU-9D, PedsQL and HUI-3. Key features of these instruments that impact on the assessment of HRQoL include the age range in which the instrument can be used, the ability for self and proxy report, and the availability and validity of value sets. These features, as well as data on measurement characteristics, including the suitability for use in certain ages and childhood conditions, differs across the instruments. This led the National Institute of Health and Care Excellence (NICE) to recently conclude that the evidence was not currently strong enough to enable the recommendation of specific instruments for paediatric populations. However, ongoing research is generating substantial evidence to further understand the measurement performance and characteristics of the instruments.

In this panel, an overview of the instruments will be provided, along with detailed description of ongoing research. This will focus on work in Australia collecting HRQoL data from more than 6,000 children across diverse health conditions (the Paediatric-Multi Instrument Comparison [P-MIC] study, which is the largest international comparison of paediatric measures conducted to date). The perspectives of HTA and industry on the measurement of paediatric HRQoL and the usefulness of the instruments in the HTA process will be discussed.