A survey of photopsias in self-reported retinitis pigmentosa: Location of photopsias is related to disease severity

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.