Living with Geographic Atrophy: An Ethnographic Study

Abstract

Introduction The specific impact from the patient’s perspective of geographic atrophy (GA), an advanced form of age-related macular degeneration (AMD), is not well understood. Methods An ethnographic study was conducted to understand the impact of bilateral GA secondary to AMD on daily functioning by observing regular activities performed at home and through semi-structured interviews. Eligible subjects had a definitive GA diagnosis, including presence of drusen, GA lesion size of at least one disc area in the better-seeing eye, and no other confounding ophthalmologic diagnosis. Data were collected via video recordings and field notes, and analyzed by coding video transcripts. Results Functional impact domains affecting more than two of the 16 subjects from the United Kingdom, United States, or Germany were activities of daily living (difficulty reading, n = 16; driving, n = 12; and watching movies, television, or theater, n = 11), emotional (frustration, and fear of blindness, n = 7 each), social/leisure (interference with hobbies, n = 8, and diminished social activities, n = 4), physical ( n = 4), and financial ( n = 10). Subjects with a best-corrected visual acuity (BCVA) of 20/100 or better in the better-seeing eye ( n = 10) reported similar functional impacts to those with a BCVA of worse than 20/100 in their better-seeing eye ( n = 5). Conclusion This study helps address gaps in patient-focused research into GA, which negatively impacts the day-to-day functioning of patients. Larger qualitative and quantitative studies are needed to quantify patient experiences and assess the correlation between BCVA score and impact of GA. Funding F. Hoffmann-La Roche Ltd.

<p>Burden of Illness in Geographic Atrophy: A Study of Vision-Related Quality of Life and Health Care Resource Use</p>

“…Most of the patients with GA who had stopped driving had done so due to their eyesight. These findings, together with the poor driving score (21.8), highlight the burden that GA places on patients in terms of limited mobility, loss of confidence, and lack of independence, and are in line with recent qualitative and ethnographic research on the psychological, emotional and physical impact of a diagnosis of GA. 10,34 It should also be noted that currently there are no requirements for regular health checks to prove driving suitability in the United Kingdom, Ireland, and Germany; rather, the responsibility is placed with the individual to notify authorities of any changes to their eyesight that could affect their driving.…”

Seeing Beyond Anatomy: Quality of Life with Geographic Atrophy

“…GA is associated with a reduction in independence and mental wellbeing. Larger areas of GA are associated with decreased visual acuity, hindering the ability to carry out daily tasks [28][29][30][31]. GA also reduces one's ability to recognise faces [32,33], and reading speed decreases as the GA lesion increases in size [31,34].…”

Acceptability of intravitreal injections in geographic atrophy: protocol for a mixed-methods pilot study

“…26 The small number of studies in this field have documented anxieties around progression of dry AMD and GA, hopelessness and despair regarding the lack of treatment options, and fears for a future with more limited sight and greater dependence on others. [27][28][29] A particular concern which participants have raised in qualitative studies is the very limited provision of information or advice at the point of diagnosis, beyond being told that nothing can be done for the condition. The lack of information, or the unclear and inaccessible nature of available information, may compound the sense of confusion and frustration many individuals living with the condition may feel.…”