First Author: S.Sivaprasad UK
Co Author(s): B. Tschosik A. Kapre I. Suner R. Guymer A. Joussen P. Lanzetta D. Ferrara
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Geographic atrophy (GA) is an advanced form of age-related macular degeneration (AMD) that affects more than 5 million people worldwide. GA is characterized by a progressive, irreversible loss of photoreceptors, retinal pigment epithelium, and/or choriocapillaris, which results in loss of visual function. There has been limited research on the impact of GA from the patient’s perspective. The purpose of this study was to better understand the lived experience of GA through ethnography.
The study was conducted in the homes of participants with GA (N=16) residing in 3 countries – USA, UK, and Germany.
This cross-sectional, qualitative study used ethnographic research methods, in which participants are studied in their own environment through observation and semi-structured interview. A trained ethnographer spent up to 6 hours in each participant’s home. Interviews were conducted in the local language and data were collected via video recording and field notes. Participants were included if they had a definitive diagnosis of bilateral GA secondary to AMD and GA lesion area of ≥1 disc area in the better-seeing eye, as clinically assessed by the referring ophthalmologists. Participants with choroidal neovascularization or other ophthalmological conditions that could confound the diagnosis of GA or the impact of GA on visual function were excluded. Participants were identified through referring retinal specialists, and categorized by Snellen equivalent (SE) best-corrected visual acuity (BCVA) in the better-seeing eye. A triangulated approach was taken to analyze video recordings, in which researchers transcribed and coded the interviews while watching the video to detect body language and visual nuances. Coding was guided by established qualitative research methods, including grounded theory and the constant comparative method. Analysis was completed using ATLAS.ti v7.5.15.
Participants (N=16) ranged in age from 67 to 96 years (median=79; 63% female). There were 10 participants (63%) with BCVA of SE 20/100 or better, 5 participants (31%) with BVCA 20/100 or worse and 1 patient (6%) with unknown BCVA in the better-seeing eye. Functional impacts reported by >2 participants were categorized into the following domains: activities of daily living (ADL), emotional, social/leisure, physical, financial. ADL impacts were most frequent, with participants reporting difficulty reading (n=16, 100%), driving (n=12, 75%), and watching movies, television or theatre (n=11, 69%). Participants also reported ADL impacts of loss of independence (n=9, 56%), difficulty recognizing faces (n=10, 63%), and difficulty performing household activities (e.g., chores, cooking) (n=10, 63%). Emotional impacts included frustration (n=7, 44%) and fear of blindness (n=7, 44%). Social/leisure impacts included interference with hobbies or leisure activities (n=8, 50%) and diminished social activities (n=4, 16%). A physical impact related to walking (e.g., walking into things, tripping, falling) was reported by 4 participants (25%). Ten participants (63%) cited a financial impact (e.g., cost of visual aids, vitamins, doctor’s office visits). Participants with BCVA of SE 20/100 or better (n=10) reported experiencing similar functional impacts as those with SE worse than 20/100 (n=5).
The impact of GA from the patient’s perspective is not well documented in the literature. In the current study, the daily life of 16 participants with GA was assessed using ethnography research methods. All participants reported that GA impacted ADLs, particularly reading, driving, watching television/movies/theatre, recognizing faces, and performing household activities, and most participants also reported financial and social impacts. Participants with BCVA of SE 20/100 or better and worse than SE 20/100 reported similar functional impacts across domains, suggesting that BCVA may not fully capture the impact of GA from the patient’s perspective. Although the small sample size precludes statistical inferences, the identification of common themes across participants lays the groundwork for larger, quantitative studies. These results will enhance awareness of the daily impact of GA and may facilitate patient-centreed conversations. Understanding the patient’s perspective is an integral part of understanding GA and the potential benefits of future treatments.