Patient-reported health-related quality of life in individuals with inherited retinal diseases

Deborah Schofield, Joshua Kraindler, Owen Tan, Rupendra Shrestha, Diana Jelovic, Sarah West, Alan Ma, John Grigg, Robyn V. Jamieson

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10 Citations (Scopus)
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Abstract

Purpose: To evaluate the impact of inherited retinal diseases (IRDs) on quality of life (QoL) using multiattributable health utilities derived from primary patient data.
Design: Cross-sectional observational study.
Participants: Seventy adult patients (mean age, 42.7 years) with IRD recruited from state-wide services in Australia.
Methods: Health utility values were calculated from the Assessment of Quality of Life 8-Dimension (AQoL-8D). Linear regressions were used to analyze the relationship between the 25-item and 39-item National Eye Institute Visual Function Questionnaires (NEI-VFQ-25 and NEI-VFQ-39, respectively) and health utilities from the AQoL-8D.
Main Outcome Measures: The AQoL-8D utility values were compared between the IRD cohort and population norms. Regressions were used to determine explanatory power of the NEI-VFQ-25 and NEI-VFQ-39 for health utilities from the AQoL-8D.
Results: Average health-related utility for patients with IRD was 0.58, significantly lower than population norms of 0.80. The IRD patient scores were significantly lower than population norms for all 8 domains of the AQoL-8D. Regressions showed a statistically significant relationship between the NEI-VFQ-39 and AQoL-8D, with the NEI-VFQ-39 and other clinical data explaining up to 73% of the variation in AQoL-8D values and 69% of the variation in the NEI-VFQ-25 values.
Conclusions: Patients with IRD have significantly lower utility values across all dimensions of QoL, with the largest differences in independent living, senses, and relationships. The NEI-VFQ-25 and NEI-VFQ-39 are highly correlated with overall AQoL-8D utilities and, combined with other data, can reasonably estimate QoL utilities required for cost-effectiveness studies.
Original languageEnglish
Article number100106
Pages (from-to)1-10
Number of pages10
JournalOphthalmology Science
Volume2
Issue number1
DOIs
Publication statusPublished - Mar 2022

Bibliographical note

Copyright 2022 by the American Academy of Ophthalmology. Published by Elsevier Inc. 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

  • Cost-effectiveness analysis
  • Inherited retinal diseases
  • Quality of life
  • Utilities

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