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

Retina. 2009 Nov-Dec;29(10):1513-21. doi: 10.1097/IAE.0b013e3181af0d57.


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.

Publication types

  • Comparative Study
  • Research Support, N.I.H., Extramural

MeSH terms

  • Adult
  • Aged
  • Female
  • Health Surveys
  • Humans
  • Internet
  • Light
  • Male
  • Middle Aged
  • Retinitis Pigmentosa / classification
  • Retinitis Pigmentosa / physiopathology*
  • Self Disclosure
  • Vision Disorders / classification
  • Vision Disorders / physiopathology*
  • Visual Acuity