Psychometric assessment of EQ-5D-5L, EQ-HWB and EQ-5D-Y-5L in rare genetic diseases: a mixed methods approach

Project Details

Genomic testing is starting to be translated into clinical practice for people with rare genetic diseases. However, data on the outcomes of genomic testing is sparse, and there is uncertainty regarding the appropriate outcome measures to use. Data on the use of both established and new instruments, such as the EQ-5D-5L, EQ-HWB and EQ-5D-Y-5L, would inform more robust health technology assessment decisions in this context.

This project aims to assess the psychometric properties of the EQ-5D-5L, EQ-HWB, and EQ-5D-Y-5L instruments in adult patients and parents of children with lived experience of rare genetic diseases in Australia and England using mixed methods.

Project Duration

2022–2023

Researchers

• A/Prof Ilias Goranitis (Project Lead)
• Mackenzie Bourke

Funding

EUROQOL; Research Grant