Abstract
Purpose :
GA, the advanced form of dry age-related macular degeneration (AMD), is a leading cause of blindness in the elderly; however, there is limited research on patient experiences. We conducted a qualitative study of the clinical, financial, and humanistic burden of GA to characterize patient perspectives on living with the disease. The results of this qualitative study guided the design of a global GA patient survey launched in 2021 and are being presented here for the first time.
Methods :
Semi-structured interviews were conducted with 28 purposively sampled patients in the US (n=22), UK (n=4), and Australia (n=2). Inclusion criteria were age ≥60 years, a diagnosis of GA in at least 1 eye that did not also have neovascular AMD, and English fluency. Patients were excluded if they had neovascular AMD in both eyes, Stargardt disease, major cognitive impairment, or if they were in an AMD clinical trial or on any investigational agent to treat GA. Consensus-based coding and thematic analysis, using a primarily inductive approach, was conducted using ATLAS.ti. Thematic saturation was assessed in 5 waves and achieved in wave 4.
Results :
Mean participant age was 80, and 48% of the sample was female. Major clinical burden concerns among patients included the lack of GA treatment and disease information, poor patient-provider communication, unpredictability of progression, and confusion about the difference between GA and wet AMD or other eye conditions. Major humanistic burden concerns included: impacts on mental health; impacts of visual changes on daily activities (reading, driving, shopping, cooking, cleaning, hygiene, personal care, and hobbies); impacts on social and family life. Patients reported the current or threatened loss of independence was their overriding concern. Key markers of independence included: driving, walking in unfamiliar places, and doing daily activities with little assistance. Patients reported personal injuries and driving accidents due to GA and worried about safety. Financial worries included affording products and services for the vision-impaired, job loss, and needing to hire care.
Conclusions :
There is a clear significant unmet need for patients beyond therapy, including GA treatment, disease information, and social and mental health support. Further research is needed to understand the clinical, financial, and humanistic burden of GA on patients.
This abstract was presented at the 2022 ARVO Annual Meeting, held in Denver, CO, May 1-4, 2022, and virtually.