Understanding the Geographic Atrophy Journey: Patient and Physician Perspectives to Inform Better Care

Geographic atrophy (GA) can place substantial physical and emotional burdens on affected individuals, related to both the disease and its treatment. Here, we provide insights into the perspectives of a patient with GA and retina specialists around GA diagnosis, treatment, communication, and needs.

Unstructured qualitative interviews were conducted with a patient author with GA and two retina specialist authors involved in the management of GA. The authors discussed early GA symptoms, its diagnosis and management, treatment experience, support, and education.

Several themes emerged. A GA diagnosis can be emotionally distressing and difficult for patients to accept. The reality is that although current treatments delay progression of further visual impairments, these therapies do not restore lost vision. Current GA treatments are associated with frequent clinic visits and intravitreal injections that can lead to discomfort and temporary visual disturbances, which are disruptive to daily life. Physicians also noted a lack of clinical endpoints for guiding optimal dosing. The importance of patient-physician communication in the management of GA was highlighted, focusing on an approach that incorporates the emotional and practical needs of patients. Physicians play a central role in ensuring treatment compliance to minimize further vision loss. Peer support is also invaluable for sharing experiences, treatment expectations, and reassurance. Finally, patient and provider suggestions for improving outcomes for people with GA were discussed, including access to patient-focused educational materials on GA and treatment, development of tangible endpoints in clinical trials, and facilitation of peer support. All authors supported the development of long-acting formulations, systemic medications, or optimally a cure, to reduce treatment burden.

GA and its treatment place a substantial burden on patients. Multiple opportunities remain to improve the experiences of people with GA and empower patients to understand their condition and treatment, which ultimately could improve their outcomes. Audio feature available for this article.