QALYs and rare diseases: exploring the responsiveness of SF-6D, EQ-5D-5L and AQoL-8D following genomic testing for childhood and adult-onset rare genetic conditions in Australia

QALYs and rare diseases: exploring the responsiveness of SF-6D, EQ-5D-5L and AQoL-8D following genomic testing for childhood and adult-onset rare genetic conditions in Australia

Abstract Background Genomic testing transforms the diagnosis and management of rare conditions. However, uncertainty exists on how to best measure genomic outcomes for informing healthcare priorities. Using the HTA-preferred method should be the starting point to improve the evidence-base. This stud...

Full description

Bibliographic Details
Main Authors: Tianxin Pan, You Wu, James Buchanan, Ilias Goranitis
Format: Article
Language:English
Published: BMC 2023-12-01
Series:Health and Quality of Life Outcomes
Subjects:
Personal utility
Patient-reported outcome measures
Genomic sequencing
Rare disease
Responsiveness
Online Access:https://doi.org/10.1186/s12955-023-02216-9

Internet

https://doi.org/10.1186/s12955-023-02216-9

Similar Items