EQ-5D-5L health utility scores in Australian adults with inherited retinal diseases: A cross-sectional survey

Myra B McGuinness; Lauren N Ayton; Deborah Schofield; Alexis Ceecee Britten-Jones; Fred K Chen; John R Grigg; Ziyi Qi; Joshua Kraindler; Rupendra Shrestha; Heather G Mack

doi:10.1111/aos.16634

EQ-5D-5L health utility scores in Australian adults with inherited retinal diseases: A cross-sectional survey

Acta Ophthalmol. 2024 Jan 16. doi: 10.1111/aos.16634. Online ahead of print.

Authors

Myra B McGuinness^{1

2

3}, Lauren N Ayton^{1

2

4}, Deborah Schofield⁵, Alexis Ceecee Britten-Jones^{1

4}, Fred K Chen^{1

2

6

7}, John R Grigg^{8

9}, Ziyi Qi³, Joshua Kraindler⁵, Rupendra Shrestha⁵, Heather G Mack^{1

2}

Affiliations

¹ Centre for Eye Research Australia, Royal Victorian Eye & Ear Hospital, University of Melbourne, Melbourne, Victoria, Australia.
² Ophthalmology, Department of Surgery, University of Melbourne, Melbourne, Victoria, Australia.
³ Centre for Epidemiology and Biostatistics, Melbourne School of Population and Global Health, University of Melbourne, Melbourne, Victoria, Australia.
⁴ Department of Optometry and Vision Sciences, University of Melbourne, Melbourne, Victoria, Australia.
⁵ GenIMPACT: Centre for Economic Impacts of Genomic Medicine, Macquarie Business School, Macquarie University, Sydney, New South Wales, Australia.
⁶ Centre for Ophthalmology and Visual Sciences (incorporating Lions Eye Institute), The University of Western Australia, Perth, Western Australia, Australia.
⁷ Department of Ophthalmology, Perth Children's Hospital, Nedlands, Western Australia, Australia.
⁸ Save Sight Institute, The University of Sydney, Sydney, New South Wales, Australia.
⁹ Eye Genetics Research Unit, Sydney Children's Hospitals Network, Save Sight Institute, Children's Medical Research Institute, University of Sydney, Sydney, New South Wales, Australia.

PMID: 38226448
DOI: 10.1111/aos.16634

Abstract

Purpose: Economic evaluations of interventions for ocular disease require utility scores that accurately represent quality of life in the target population. This study aimed to describe the distribution of EQ-5D-5L utility values among Australian adults with symptomatic inherited retinal diseases (IRDs) and to assess the relationship between these scores and vision-related quality of life.

Methods: A survey was administered predominantly online in 2021. Participants completed the EQ-5D-5L general health utility instrument, the EQ vertical visual analogue scale (EQ-VAS) and the National Eye Institute Visual Functioning Questionnaire (NEI-VFQ-25). Self-reported IRD diagnoses were classified as being associated with central or widespread retinal involvement.

Results: Responses from 647 participants aged 18-93 years were included, 50.1% were men and 77.6% had an IRD associated with widespread retinal involvement. The majority reported no problems with self-care and no pain/discomfort but did report anxiety/depression and problems with work, study, housework, or family/leisure activities. Most people with widespread involvement reported problems with mobility. Median EQ-5D-5L utility was 0.88 and 0.91 among people with widespread and central involvement, respectively (age and sex-adjusted p = 0.029); and median EQ-VAS was 75 and 80, respectively (adjusted p = 0.003). A moderate curvilinear correlation was observed between EQ-5D-5L and NEI-VFQ-25 composite score (Spearman's ρ 0.69), but not all people with poor vision-related quality of life had low EQ-5D-5L utility values.

Conclusions: EQ-5D-5L health utility values are correlated with vision-related quality of life among adults with IRDs. However, the EQ-5D-5L may not be sensitive to the full impact of vision impairment on quality of life.

Keywords: health utility; inherited retinal disease; macular dystrophy; patient-reported outcome measures; patient-reported outcomes; retinitis pigmentosa; rod-cone dystrophy; vision-related quality of life.

Abstract

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