Ryan Lange1, Abigail Kumagai1, Sara Weiss1, Katherine B Zaffke1, Sherry Day1, Donna Wicker1, Ashley Howson1, K Thiran Jayasundera1, Lori Smolinski2, Christina Hedlich2, Paul P Lee1,3, Robert W Massof4, Joan A Stelmack5, Noelle E Carlozzi3,6,7, Joshua R Ehrlich8,9. 1. Department of Ophthalmology and Visual Sciences, Center for Eye Policy and Innovation, University of Michigan, 1000 Wall Street, Ann Arbor, MI, 48105, USA. 2. Association for the Blind and Visually Impaired, Grand Rapids, MI, USA. 3. Institute for Healthcare Policy and Innovation, University of Michigan, Ann Arbor, MI, USA. 4. Department of Ophthalmology, Johns Hopkins University, Baltimore, MD, USA. 5. Edward Hines, Jr. VA Hospital, Hines, IL, USA. 6. Department of Physical Medicine and Rehabilitation, University of Michigan, Ann Arbor, MI, USA. 7. Center for Outcomes Development and Application, University of Michigan, Ann Arbor, MI, USA. 8. Department of Ophthalmology and Visual Sciences, Center for Eye Policy and Innovation, University of Michigan, 1000 Wall Street, Ann Arbor, MI, 48105, USA. joshre@med.umich.edu. 9. Institute for Healthcare Policy and Innovation, University of Michigan, Ann Arbor, MI, USA. joshre@med.umich.edu.
Abstract
BACKGROUND: 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). 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. METHODS: Individuals 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. RESULTS: The 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. CONCLUSIONS: There 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.
BACKGROUND: 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). 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. METHODS: Individuals 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. RESULTS: The 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. CONCLUSIONS: There 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.
Entities:
Keywords:
Glaucoma; Interview; Low vision; Patient-reported outcome; Peripheral field loss; Peripheral vision; Qualitative research; Retinitis pigmentosa; Vision rehabilitation; Vision-related quality of life
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