July 2019
Volume 60, Issue 9
Free
ARVO Annual Meeting Abstract  |   July 2019
Functioning and Vision-Related Quality of Life in Severe Peripheral Field Loss due to Retinitis Pigmentosa: A Outcome Measure Development Project
Author Affiliations & Notes
  • Ryan Lange
    Center for Eye Policy and Innovation in the Department of Ophthalmology and Visual Sciences, University of Michigan-Ann Arbor, Ann Arbor, Michigan, United States
  • Abigail Kumagai
    Center for Eye Policy and Innovation in the Department of Ophthalmology and Visual Sciences, University of Michigan-Ann Arbor, Ann Arbor, Michigan, United States
  • Katherine Bissen
    Center for Eye Policy and Innovation in the Department of Ophthalmology and Visual Sciences, University of Michigan-Ann Arbor, Ann Arbor, Michigan, United States
  • Christina Hedlich
    Association for the Blind and Visually Impaired, Grand Rapids, Michigan, United States
  • Lori Smolinski
    Association for the Blind and Visually Impaired, Grand Rapids, Michigan, United States
  • Noelle Carlozzi
    Department of Physical Medicine and Rehabilitation, University of Michigan-Ann Arbor, Michigan, United States
    Center for Outcomes Development and Application, University of Michigan-Ann Arbor, Michigan, United States
  • John Creswell
    Department of Family Medicine, University of Michigan-Ann Arbor, Michigan, United States
  • Robert W Massof
    Department of Ophthalmology,, Johns Hopkins University, Maryland, United States
  • Joan Stelmack
    Edward Hines, Jr. VA Hospital, Illinois, United States
    Department of Ophthalmology, University of Illinois at Chicago, Illinois, United States
  • Paul P Lee
    Center for Eye Policy and Innovation in the Department of Ophthalmology and Visual Sciences, University of Michigan-Ann Arbor, Ann Arbor, Michigan, United States
    Institute for Health Policy and Innovation, University of Michigan-Ann Arbor, Michigan, United States
  • Joshua R Ehrlich
    Center for Eye Policy and Innovation in the Department of Ophthalmology and Visual Sciences, University of Michigan-Ann Arbor, Ann Arbor, Michigan, United States
    Institute for Health Policy and Innovation, University of Michigan-Ann Arbor, Michigan, United States
  • Footnotes
    Commercial Relationships   Ryan Lange, None; Abigail Kumagai, None; Katherine Bissen, None; Christina Hedlich, None; Lori Smolinski, None; Noelle Carlozzi, None; John Creswell, None; Robert Massof, None; Joan Stelmack, None; Paul Lee, None; Joshua Ehrlich, None
  • Footnotes
    Support  NIH/NEI K23EY027848
Investigative Ophthalmology & Visual Science July 2019, Vol.60, 4969. doi:
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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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      © ARVO (1962-2015); The Authors (2016-present)

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Abstract

Purpose : 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).

Methods : 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.

Results : 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).

Conclusions : 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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