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Ryan Lange, Abigail Kumagai, Katherine Bissen, Christina Hedlich, Lori Smolinski, Noelle Carlozzi, John Creswell, Robert W Massof, Joan Stelmack, Paul P Lee, Joshua R Ehrlich; Functioning and Vision-Related Quality of Life in Severe Peripheral Field Loss due to Retinitis Pigmentosa: A Outcome Measure Development Project. Invest. Ophthalmol. Vis. Sci. 2019;60(9):4969.
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Current patient-reported outcomes (PRO) to evaluate the effectiveness of low vision rehabilitation (LVR) were developed among patients with primarily central vision loss. Up to 20% of those seeking LVR have a condition causing peripheral field loss (PFL), and there is little evidence for the effectiveness of LVR in this population. The purpose of this mixed-methods study was to understand the impact of severe PFL due to retinitis pigmentosa (RP) on functioning and vision-related quality of life (VR-QOL).
We recruited participants with RP from the Kellogg Eye Center and the Association for the Blind and Visually Impaired. Participants had a maximum horizontal extent of 20° on the III4e isopter of the Goldmann visual field (GVF). Purposeful sampling was used to ensure a representative age and gender distribution and oversample those with preserved central vision. Participants completed semi-structured qualitative interviews, the Impact of Vision Impairment (IVI) questionnaire, and the Short Form Health Survey (SF-36). Interviews were analyzed by two coders using thematic analysis. Sample size was determined by thematic saturation.
Our sample included 17 participants (53% female, mean age 48). Mean presenting visual acuity was 0.95 logMAR and the GVF was 11° in the better-seeing eye; binocular Pelli-Robson contrast sensitivity was 0.98. Scores on the IVI (reading, mobility, emotional) ranged from 1.51-1.81, indicating “a little” to “a fair amount” of difficulty. Qualitative interviews identified 5 themes relevant across participants with RP, including Activity Limitations, Economic Impact, Mobility, Socioemotional Concerns, and Visual Activities. Concerns related to functioning focused mainly on reading, driving, and safe mobility. Participants with higher IVI scores tended to have milder concerns and more optimistic perspectives compared to those with lower IVI scores (Table 1).
There are functional and VR-QOL concerns that are common to individuals with severe PFL due to RP. The themes outlined in this study will serve as the basis for development of the Low Vision Severely Constricted Peripheral Eyesight (LV-SCOPE) questionnaire. This PRO will be relevant to function and VR-QOL in those with severe PFL and will facilitate the evaluation of LVR strategies for this population.
This abstract was presented at the 2019 ARVO Annual Meeting, held in Vancouver, Canada, April 28 - May 2, 2019.
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