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A SURVEY OF PHOTOPSIAS IN SELF-REPORTED RETINITIS PIGMENTOSA: Location of Photopsias Is Related to Disease Severity
Open accessAbstract
In Brief Purpose: To characterize photopsias or light shows in patients self-reporting retinitis pigmentosa and determine associations between their location and patient-reported visual function. Methods: One hundred and twenty-seven self-reported patients with retinitis pigmentosa with varying levels of vision completed an anonymous survey on an Internet web site. Results: One hundred and eighteen (93%) of the respondents reported photopsias. The majority (60%) who experience photopsias have them daily, 48% already had them before being diagnosed with retinitis pigmentosa, and 69% report interference with vision. The proportions noting photopsias mostly peripherally versus centrally were 53% of those reading normal or small print versus 35% requiring magnification (odds ratio, 2.3; 95% confidence interval, 1.0–5.5; P = 0.05); 61% of current drivers versus 41% who stopped or never drove (odds ratio, 2.6; 95% confidence interval, 1.0–6.7; P = 0.04); and 54% of individuals who easily navigate or have only minor difficulty in unfamiliar areas versus 29% of those with great difficulty or needing assistance with mobility (odds ratio, 3.0; 95% confidence interval, 1.2–6.7; P = 0.02). Conclusion: Contrary to common belief that photopsias are associated with end-stage retinal degeneration, they are also commonly reported in earlier stages. The location of photopsias appears to be related to residual photoreceptor function assessed by self-reported performance of daily activities. Clinicians and researchers should be aware of their frequent occurrence and offer reassurance to patients. In an online survey, 61 of 127 (48%) self-reported patients with retinitis pigmentosa noticed photopsias or light shows before diagnosis. The location of photopsias in the periphery versus centrally appears to be related to better residual photoreceptor function assessed by a greater self-reported ability to perform daily living activities.
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Spontaneous phosphenes are common in many blind persons.
“as is common in many blind persons (17-19)”
From Visual percepts evoked with an intracortical 96-channel microelectrode array inserted in human occipital cortex (2021) · cites this paper as [17]
The Results (Descriptions of Photopsias; page unavailable) report that 71% of surveyed respondents with self-reported retinitis pigmentosa described phosphenes. The Discussion describes photopsias that appear without an apparent trigger. But the survey concerns people with retinitis pigmentosa, many of whom retained useful vision; it does not establish that spontaneous phosphenes are common among blind persons generally. (LLM, conf=0.86)
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Metadata
- Authors
- BITTNER, A. K., DIENER-WEST, M., & DAGNELIE, G.
- Affiliations
- Johns Hopkins University (US)
- Venue
- Retina
- Published
- 2009-11
- Volume
- 29
- Issue
- 10
- Pages
- 1513-1521
- ISSN
- 0275-004X (ISSN-L)
- PMC
- PMC2783747
- OpenAlex
- W2324015353
- Cited by
- 34
- References
- 18
- Citations by year
- 2025: 3 · 2024: 1 · 2023: 3 · 2022: 4 · 2021: 3 · 2020: 3 · 2018: 3 · 2017: 1 · 2016: 2 · 2015: 2 · 2014: 4
- FWCI
- 0.67
- Type
- journal article
- Language
- en
- Open access
- green
- www.ncbi.nlm.nih.gov
- Locations
- Retina (publishedVersion)
- PubMed (publishedVersion)
- Europe PMC (PubMed Central) (acceptedVersion)
- PubMed Central (acceptedVersion)
- Funders
- National Eye Institute (K23EY018356)
- National Institute of Nursing Research (P30NR008995)
- Topics
- Health Sciences › Medicine › Ophthalmology › Retinal Development and Disorders
- Health Sciences › Medicine › Ophthalmology › Retinal Diseases and Treatments
- Health Sciences › Medicine › Ophthalmology › Drug-Induced Ocular Toxicity
- Keywords
- retinitis pigmentosa, photopsia, light shows, photoreceptor function, residual vision, activities of daily living, driving, mobility (physical function), retinal degeneration
- MeSH terms
- Adult, Aged, Female, Health Surveys, Humans, Light, Male, Middle Aged, Retinitis Pigmentosa, Self Disclosure, Vision Disorders, Visual Acuity, Internet
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