ArticleJournal of patient-reported outcomes2021
Vision-related quality of life in adults with severe peripheral vision loss: a qualitative interview study.
Article in Journal of patient-reported outcomes, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 19 papers.
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The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
19 citing papers in PubMed.
- The Effect of Telenursing Using Self-care Education Podcasts on Anxiety and Quality of Life of Patients with Diabetic Retinopathy Undergoing Intravitreal Injection: A Randomized Clinical Trail.International journal of community based nursing and midwifery · 2026Trial
- Mapping human visual contrast sensitivity and vision loss across the visual field with model-based fMRI.eLife · 2026Article
- Article
- Hope in working-age adults with irreversible vision loss: a scoping review.Revista da Escola de Enfermagem da U S P · 2026Article
- Health-related quality of life and tobacco and alcohol consumption in Leber hereditary optic neuropathy in Sweden.Frontiers in ophthalmology · 2026Article
- Factors Associated with Referral to Low Vision for Patients with Advanced Glaucoma.Life (Basel, Switzerland) · 2025Article
- Natural remedies proposed for the management of diabetic retinopathy (DR): diabetic complications.Naunyn-Schmiedeberg's archives of pharmacology · 2025Review
- Understanding data visualization techniques in qualitative studies used to develop and validate patient-reported outcome measures: a targeted literature review.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2025Review
- Patient-reported visual function outcomes agree with visual acuity and ophthalmologist-graded scoring of visual function among patients with long-chain 3-hydroxyacylcoA dehydrogenase deficiency (LCHADD).Molecular genetics and metabolism reports · 2024Article
- Visual activities of daily living survey for retinitis pigmentosa.Japanese journal of ophthalmology · 2024Observational
- Current Status of Clinical Trials Design and Outcomes in Retinal Gene Therapy.Cold Spring Harbor perspectives in medicine · 2024Review
- Development and Validation of the Low Vision Severely Constricted Peripheral Eyesight (LV-SCOPE) Questionnaire.American journal of ophthalmology · 2023Article
- Human Neural Progenitors Expressing GDNF Enhance Retinal Protection in a Rodent Model of Retinal Degeneration.Stem cells translational medicine · 2023Article
- A multidisciplinary approach to inherited retinal dystrophies from diagnosis to initial care: a narrative review with inputs from clinical practice.Orphanet journal of rare diseases · 2023Review
- Beyond the NEI-VFQ: Recent Experience in the Development and Utilization of Patient-Reported Outcomes for Inherited Retinal Diseases.Cold Spring Harbor perspectives in medicine · 2023Review
- Elicitation of Health State Utility Values in Retinitis Pigmentosa by Time Trade-off in the United Kingdom.ClinicoEconomics and outcomes research : CEOR · 2023Article
- Experiences of people with dual sensory loss in various areas of life: A qualitative study.PloS one · 2023Article
- Visual Difficulty, Race and Ethnicity, and Activity Limitation Trajectories Among Older Adults in the United States: Findings From the National Health and Aging Trends Study.The journals of gerontology. Series B, Psychological sciences and social sciences · 2022Article
- The impact of low vision on social function: The potential importance of lost visual social cues.Journal of optometryReview
Corrections and comments
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Authors and funding
15 authors.
Funding
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.
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