OBJECTIVES: Geographic atrophy (GA) is a retinal disease with irreversible lesion growth that may lead to blindness, impair functional vision, and impact patients’ independence. It is associated with significant economic burden to society and healthcare systems with no available treatments outside the United States. Health-related quality-of-life (HRQoL) data suitable for generating utility values in GA populations are unavailable. This study aimed to explore the HRQoL impact of GA to generate a set of health-state vignettes. These will be valued using the time trade-off approach to obtain utilities for use in economic evaluations of treatments for GA.

METHODS: Qualitative interviews with patients with GA and retina specialists were conducted to elicit data on the HRQoL impact of GA. Patients across a range of disease severities were interviewed to obtain personal accounts of the HRQoL impact of the disease, and retina specialists provided views of the HRQoL impacts on patients as the condition progresses. Data were analysed using thematic analysis.

RESULTS: Interviews were conducted with 3 retina specialists and 9 patients (mean age, 71 years) with GA across a range of mild to severe visual impairment, based on best-corrected visual acuity (BCVA) scores. There was convergence between patients and retina specialists on the symptoms of GA experienced. The most severe impacts of GA on HRQoL reported by participants were blurred or lost central vision, loss of reading ability, and headaches/strain on eyes. Patients also reported experiencing anxiety about their condition deteriorating. Some patients perceived their disease severity worse than the retina specialists would ascribe based on their BCVA measurements, and others as better. This may be related to the personal experiences of patients.

CONCLUSIONS: GA has a significant negative impact on patients’ HRQoL. A discrepancy in perceived disease severity was observed between some patients and retina specialists based on BCVA measurements.