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

Glaucoma Interview Low vision Patient-reported outcome Peripheral field loss Peripheral vision Qualitative research Retinitis pigmentosa Vision rehabilitation Vision-related quality of life

Journal

Journal of patient-reported outcomes
ISSN: 2509-8020
Titre abrégé: J Patient Rep Outcomes
Pays: Germany
ID NLM: 101722688

Informations de publication

Date de publication:
13 Jan 2021
Historique:
received: 30 06 2020
accepted: 29 12 2020
entrez: 13 1 2021
pubmed: 14 1 2021
medline: 14 1 2021
Statut: epublish

Résumé

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. 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. 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. 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.

Sections du résumé

BACKGROUND 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 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 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 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.

Identifiants

DOI: 10.1186/s41687-020-00281-y PMID: 33439361 PMC: PMC7806695
pubmed: 33439361
doi: 10.1186/s41687-020-00281-y
pii: 10.1186/s41687-020-00281-y
pmc: PMC7806695
doi:

Types de publication

Journal Article

Langues

eng

Pagination

7

Subventions

Organisme : NEI NIH HHS
ID : K23 EY026985
Pays : United States
Organisme : NEI NIH HHS
ID : K23 EY027848
Pays : United States
Organisme : NEI NIH HHS
ID : K23EY027848
Pays : United States

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Auteurs

Ryan Lange (R)

Department of Ophthalmology and Visual Sciences, Center for Eye Policy and Innovation, University of Michigan, 1000 Wall Street, Ann Arbor, MI, 48105, USA.

Abigail Kumagai (A)

Department of Ophthalmology and Visual Sciences, Center for Eye Policy and Innovation, University of Michigan, 1000 Wall Street, Ann Arbor, MI, 48105, USA.

Sara Weiss (S)

Department of Ophthalmology and Visual Sciences, Center for Eye Policy and Innovation, University of Michigan, 1000 Wall Street, Ann Arbor, MI, 48105, USA.

Katherine B Zaffke (KB)

Department of Ophthalmology and Visual Sciences, Center for Eye Policy and Innovation, University of Michigan, 1000 Wall Street, Ann Arbor, MI, 48105, USA.

Sherry Day (S)

Department of Ophthalmology and Visual Sciences, Center for Eye Policy and Innovation, University of Michigan, 1000 Wall Street, Ann Arbor, MI, 48105, USA.

Donna Wicker (D)

Department of Ophthalmology and Visual Sciences, Center for Eye Policy and Innovation, University of Michigan, 1000 Wall Street, Ann Arbor, MI, 48105, USA.

Ashley Howson (A)

Department of Ophthalmology and Visual Sciences, Center for Eye Policy and Innovation, University of Michigan, 1000 Wall Street, Ann Arbor, MI, 48105, USA.

K Thiran Jayasundera (KT)

Department of Ophthalmology and Visual Sciences, Center for Eye Policy and Innovation, University of Michigan, 1000 Wall Street, Ann Arbor, MI, 48105, USA.

Lori Smolinski (L)

Association for the Blind and Visually Impaired, Grand Rapids, MI, USA.

Christina Hedlich (C)

Association for the Blind and Visually Impaired, Grand Rapids, MI, USA.

Paul P Lee (PP)

Department of Ophthalmology and Visual Sciences, Center for Eye Policy and Innovation, University of Michigan, 1000 Wall Street, Ann Arbor, MI, 48105, USA.
Institute for Healthcare Policy and Innovation, University of Michigan, Ann Arbor, MI, USA.

Robert W Massof (RW)

Department of Ophthalmology, Johns Hopkins University, Baltimore, MD, USA.

Joan A Stelmack (JA)

Edward Hines, Jr. VA Hospital, Hines, IL, USA.

Noelle E Carlozzi (NE)

Institute for Healthcare Policy and Innovation, University of Michigan, Ann Arbor, MI, USA.
Department of Physical Medicine and Rehabilitation, University of Michigan, Ann Arbor, MI, USA.
Center for Outcomes Development and Application, University of Michigan, Ann Arbor, MI, USA.

Joshua R Ehrlich (JR)

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.
Institute for Healthcare Policy and Innovation, University of Michigan, Ann Arbor, MI, USA. joshre@med.umich.edu.
ORCID: 0000-0002-0607-3564

Classifications MeSH