Purpose:
To gain insight directly from patients about key symptoms, functional limitations and quality of life impacts associated with geographic atrophy (GA).
Methods:
Qualitative research was conducted in subjects enrolled from a clinical site in the US who met specific inclusion/exclusion criteria. Three focus groups and 6 interviews were conducted by trained moderators using IRB approved discussion guides. To facilitate concept elicitation, discussions were initiated with open-ended questions, followed by more specific queries based on facts identified from the literature as well as interviews with clinicians. All discussions were recorded and audio-data was transcribed for analyses. Atlas.TI software was used to analyze and organize responses into themes and concepts.
Results:
Twenty two subjects with bilateral GA participated in either a focus group or a telephone interview. Mean age was 81 years; 89% were female; 91% were Caucasian; and 41% were living alone. Visual acuity ranged from 20/40 or better (N=5), 20/50-20/190 (N=9), to 20/200 or worse (N=8). Participants reported a range of symptoms including distorted vision (e.g. blurred vision, wavy appearance, shadow and floaters, color vision disturbances, and depth perception) and luminance adaptation issues. Difficulties in many aspects of activities of daily living (ADLs) were also reported including 1) hobbies, social and family life; 2) basic and instrumental ADLs (self-care, walking, shopping, banking, using telephone, paying bills, etc); and 3) psychological well-being (feeling sad, angry, frustrated or anxious etc). The most bothersome problems, as reported by participants, were difficulties in reading, driving, and recognizing people. A variety of adaptation strategies (e.g. task avoidance, device support, and life style modification) were applied to limit impairments resulting from GA symptoms.
Conclusions:
GA patients experience many vision-related symptoms that result in a broad range of difficulties in activities of daily living. They appear to use various strategies to adapt to their visual deficits to maintain functional capacity. The results of this study have implications for evaluating outcomes of treatments for GA.
Keywords: quality of life • age-related macular degeneration