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

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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.

Original languageEnglish
Pages (from-to)e736-e745
Number of pages10
JournalActa Ophthalmologica
Volume102
Issue number5
Early online date16 Jan 2024
DOIs
Publication statusPublished - Aug 2024

Bibliographical note

© 2024 The Authors. Acta Ophthalmologica published by John Wiley & Sons Ltd on behalf of Acta Ophthalmologica Scandinavica Foundation. Version archived for private and non-commercial use with the permission of the author/s and according to publisher conditions. For further rights please contact the publisher.

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

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