Seeing it differently: self-reported description of vision loss in dry age-related macular degeneration

Abstract

PURPOSE: A realistic description of visual symptoms associated with dry age-related macular degeneration (AMD) is important for raising awareness of the condition and educating patients. This study aimed to develop a set of descriptors for dry AMD and examine the realism of images currently and frequently used to show visual symptoms of the condition. METHODS: Volunteers with dry AMD with a range of disease severity were given an eye examination and were asked to describe visual symptoms of their condition in a conversational interview. Participants were also asked to comment on a photograph typically used to portray the visual symptoms of AMD. Interviews were audio recorded, transcribed and subjected to content analysis. RESULTS: Twenty-nine participants were interviewed. Median (interquartile range [IQR]) age was 75 (70, 79) years. Median (IQR) binocular visual acuity (VA) and Pelli-Robson contrast sensitivity (CS) was 0.2 (0.18, 0.36) logMAR and 1.65 (1.50, 1.95) log CS respectively. Three, 17 and nine patients had early, intermediate and late (geographic atrophy, GA) AMD, respectively. The most frequently reported descriptor group was blur (n = 13) followed by missing (n = 10) and distortion (n = 7). We chose the most popular image used to portray the visual symptoms of dry AMD based on an internet search and showed this to 21 participants. Sixteen participants (76% [95% confidence interval 53-92%]), including three out of the seven people with geographic atrophy, unequivocally rejected the realism of the image. CONCLUSIONS: People with dry AMD use a wide range of descriptors for their visual experience. Visual symptoms of dry AMD as portrayed by commonly shown images were not the experience of most people in this study.