A Survey of Photopsias in Self-Reported Retinitis Pigmentosa

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.