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. 2024 Jan;33(1):45-57.
doi: 10.1007/s11136-023-03498-8. Epub 2023 Aug 10.

Assessing health state utilities for people with myalgic encephalomyelitis/chronic fatigue syndrome in Australia using the EQ-5D-5L, AQoL-8D and EQ-5D-5L-psychosocial instruments

Nneka C Orji  1 , Ingrid A Cox  1 , Leonard A Jason  2 , Gang Chen  3 , Ting Zhao  1   4 , Melissa J Rogerson  5 , Ryan M Kelly  5 , Karen Wills  1 , Martin Hensher  1 , Andrew J Palmer  1 , Barbara de Graaff #  6 , Julie A Campbell #  1
Affiliations

Assessing health state utilities for people with myalgic encephalomyelitis/chronic fatigue syndrome in Australia using the EQ-5D-5L, AQoL-8D and EQ-5D-5L-psychosocial instruments

Nneka C Orji et al. Qual Life Res. 2024 Jan.

Abstract

Purpose: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic condition with a constellation of symptoms presenting as severe and profound fatigue of ≥ 6 months not relieved by rest. ME/CFS affects health-related quality of life (HRQoL), which can be measured using multi-attribute health state utility (HSU) instruments. The aims of this study were to quantify HSUs for people living with ME/CFS, and to identify an instrument that is preferentially sensitive for ME/CFS.

Methods: Cross-sectional national survey of people with ME/CFS using the AQoL-8D and EQ-5D-5L. Additional questions from the AQoL-8D were used as 'bolt-ons' to the EQ-5D-5L (i.e., EQ-5D-5L-Psychosocial). Disability and fatigue severity were assessed using the De Paul Symptom Questionnaire-Short Form (DSQ-SF). HSUs were generated using Australian tariffs. Mean HSUs were stratified for sociodemographic and clinical factors. Bland-Altman plots were used to compare the three HSU instruments.

Results: For the 198 participants, mean HSUs (95% confidence intervals) were EQ-5D-5L: 0.46 (0.42-0.50); AQoL-8D: 0.43 (0.41-0.45); EQ-5D-5L-Psychosocial: 0.44 (0.42-0.46). HSUs were substantially lower than population norms: EQ-5D-5L: 0.89; AQoL-8D: 0.77. As disability and fatigue severity increased, HSUs decreased in all three instruments. Bland-Altman plots revealed interchangeability between the AQoL-8D and EQ-5D-5LPsychosocial. Floor and ceiling effects of 13.5% and 2.5% respectively were observed for the EQ-5D-5L instrument only.

Conclusions: ME/CFS has a profound impact on HRQoL. The AQoL-8D and EQ-5D-5L-Psychosocial can be used interchangeably: the latter represents a reduced participant burden.

Keywords: CFS; Health state utility; Health-related quality of life; ME; Psychosocial health; Quality of life.

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Conflict of interest statement

The authors declare that they have no relevant competing interests.

Figures

Fig. 1
Fig. 1
Mean HSUs based on disability and fatigue severity
Fig. 2
Fig. 2
a–c Bland Altman’s Plots showing pair-wise differences and limits of agreements between instruments
See this image and copyright information in PMC

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