Quality of life impact of eye diseases: a Save Sight Registries study

Clin Exp Ophthalmol. 2022 May;50(4):386-397. doi: 10.1111/ceo.14050. Epub 2022 Feb 7.


Background: The objectives of this study were to evaluate the quality-of-life (QoL) impact of eye diseases (keratoconus; neovascular age-related macular degeneration, AMD; retinal vein occlusion, RVO; and diabetic macular edema, DME) using the Impact of Vision Impairment (IVI) questionnaire, and to determine the relationship between the IVI scores and visual acuity.

Methods: This cross-sectional, multicentre, real-world study utilised the prospective, web-based Save Sight Registries. The IVI was completed by 1557 patients: 307 with keratoconus, 1049 with AMD, 148 with RVO and 53 with DME. Statistical analysis included Rasch analysis, Welch t-test, one-way ANOVA, Tukey's test, Pearson correlation, and multiple regression.

Results: The IVI scales (Overall; Visual Function, VF; Emotional, EM) had robust psychometric properties. The keratoconus patients had the worst Overall (adjusted mean: 48.2 vs. DME 58.8, RVO 64.6, AMD 67.6 units), VF (47.7 vs. DME 59.4, RVO 65.9, AMD 68.9 units) and EM (50.8 vs. DME 63.1, RVO 69.2, AMD 71.8 units) scores (all p < 0.05). The IVI scales scores weakly correlated with better and worse eye visual acuity (Pearson's r 0.24-0.39, all p < 0.05). The correlations were similar in the better eye (Overall 0.35, VF 0.39, EM 0.24) and the worse eye (Overall 0.31, VF 0.33, EM 0.25) visual acuity. Correlations with visual acuity were stronger for VF than for the EM scores.

Conclusions: The IVI was a psychometrically robust QoL questionnaire. Keratoconus patients had worse IVI scores than patients with retinal diseases. The low strength of correlations between visual acuity and QoL scores, although statistically significant, suggested that a complex relationship exists.

Keywords: Quality of life; Questionnaire; Rasch analysis; Retinal vein occlusion; Visual function; age-related macular degeneration; diabetic macular edema; emotional; keratoconus; patient-reported outcomes.

MeSH terms

  • Cross-Sectional Studies
  • Diabetic Retinopathy*
  • Humans
  • Keratoconus* / diagnosis
  • Keratoconus* / epidemiology
  • Macular Edema*
  • Prospective Studies
  • Quality of Life / psychology
  • Registries
  • Surveys and Questionnaires