Vision-related quality of life in adults with severe peripheral vision loss: a qualitative interview study

Joan A. Stelmack,Ashley Howson,Robert W. Massof,Paul P. Lee,Christina Hedlich,Joshua R. Ehrlich,Sherry Day,Sara Weiss,Abigail Kumagai,Donna Wicker,Noelle E. Carlozzi,Ryan Lange,Lori Smolinski,Katherine B. Zaffke,K. Thiran Jayasundera

doi:10.1186/s41687-020-00281-y

Abstract

BackgroundExisting patient-reported outcome (PRO) measures may not be relevant to the full range of functional and vision-related quality of life (VR-QOL) concerns of individuals with vision impairment due to severe peripheral field loss (PFL). Measurement of VR-QOL in severe PFL is important in order to determine the effectiveness of vision rehabilitation interventions for this population. The purpose of this study was to characterize the impact of severe PFL due to retinitis pigmentosa (RP) and glaucoma on VR-QOL as the initial phase in the development of a novel PRO measure.MethodsIndividuals with severe PFL due to RP or glaucoma were recruited from the Kellogg Eye Center and the Association for the Blind and Visually Impaired. Participants completed semi-structured qualitative interviews, the Impact of Vision Impairment (IVI) questionnaire and the RAND 36-Item Health Survey. Interviews were analyzed by two coders using thematic analysis. A matrix analysis was conducted to compare VR-QOL by cause of severe PFL. Sample size was determined by thematic saturation.ResultsThe study included 37 participants (19 RP, 18 glaucoma). Median best-corrected visual acuity for those with RP and glaucoma was 20/40 and 20/27.5, while Pelli-Robson contrast sensitivity was 1.2 log contrast sensitivity (logCS) and 1.1 logCS, respectively. Median domain scores on the IVI (reading, mobility, well-being) ranged from a low of − 0.2 to a high of 0.7 logits in those with RP and from 0.5 to 1.2 logits in those with glaucoma. Qualitative interviews identified six VR-QOL themes relevant across participants with both RP and glaucoma, including activity limitations, driving, emotional well-being, reading, mobility, and social function. VR-QOL concerns were largely consistent among those with severe PFL due to RP and glaucoma. These overarching themes contained content relevant to specific challenges related to severe PFL.ConclusionsThere are commonly occurring VR-QOL concerns among individuals with severe PFL due to RP and glaucoma. The outlined themes will serve as the basis for development of the Low Vision Severely Constricted Peripheral Eyesight (LV-SCOPE) Questionnaire.

Highlights

Existing patient-reported outcome (PRO) measures may not be relevant to the full range of functional and vision-related quality of life (VR-QOL) concerns of individuals with vision impairment due to severe peripheral field loss (PFL)
The outlined themes will serve as the basis for development of the Low Vision Severely Constricted Peripheral Eyesight (LV-SCOPE) Questionnaire
The current study provides a qualitative analysis of the impact of severe PFL on VR-QOL

Summary

Introduction

Existing patient-reported outcome (PRO) measures may not be relevant to the full range of functional and vision-related quality of life (VR-QOL) concerns of individuals with vision impairment due to severe peripheral field loss (PFL). No randomized controlled trial of vision rehabilitation [6] has targeted patients with peripheral field loss (PFL), a recognized cause of impaired functioning [7,8,9] and decreased vision-related quality of life (VRQOL) [10, 11] that often results from conditions such as retinitis pigmentosa (RP) and glaucoma. The prevalence of low vision due to PFL is not fully known, a survey of vision rehabilitation centers across the U.S found that 21% of patients had a diagnosis of glaucoma or retinal degeneration [12], and in a multicenter study Goldstein et al determined that 14% of patients presenting for vision rehabilitation had one of these diagnoses [13] These data may underestimate the true burden of PFL since conditions such as non-glaucomatous optic neuropathies or a history of panretinal photocoagulation (e.g., for diabetic retinopathy) may cause PFL, but do so less consistently or were not sufficiently captured. There is evidence that PFL can affect other domains of VR-QOL [20,21,22], though a multi-dimensional instrument to measure the impact of severe PFL on VR-QOL does not yet exist

Objectives

Methods

Results

Discussion

Conclusion