When discussing geographic atrophy (GA) with patients, it is helpful to approach the conversation with three core communication principles: clarity, empathy, and hope. It is important to position GA as progressive but manageable, and not synonymous with complete loss of vision. However, it is also essential to educate patients on the realities of treatment.
Personalizing the Conversation
When I am delivering a diagnosis of GA to a patient, I try my best to simplify the disease process. I have found that using analogies—such as a worn carpet or patches of dead grass in a yard—helps improve patient understanding. I then tailor the conversation to the needs of the patient:
- For patients with early disease, I emphasize the importance of early detection and the opportunity to slow progression.
- For patients with advanced disease, I acknowledge the existing vision loss and reinforce that limiting further progression remains meaningful because preserving remaining vision and quality of life still matters.
Building Treatment Commitment
and Support
After emphasizing the core goal of GA treatment—slowing disease progression rather than restoring vision—I review the main management options with my patients, depending on disease severity: monitoring or treatment with FDA-approved complement inhibitor therapies. I often share published data, but keep the message simple: With treatment, lesion growth can be slowed by about 20% to 30%, and with continued treatment the effect may increase over time, reaching up to about 42% to 45% in some longer-term or subgroup analyses.1-4
Because it can be painful to receive a diagnosis of GA, I also make sure patients receive support and reinforcement throughout the discussion. This includes:
- A structured communication technique, ask-tell-ask, to confirm understanding of the diagnosis and treatment goals.
- The patient’s own OCT and fundus autofluorescence images to demonstrate progression over time.
- Supplementary education, such as videos and staff reinforcement.
- Inclusion of care partners to help with logistics, decision-making, and realistic treatment expectations.
Supporting Treatment Adherence and Addressing Barriers
In my experience, the most common reasons for nonadherence are treatment burden, transportation issues, cost concerns, and initial anxiety about injections. While we cannot address every reason for patient dropout, I use several proactive approaches to gauge patient comfort and commitment. In addition to setting expectations early about ongoing treatment requirements, I use commitment scaling, asking patients to rate their confidence with future compliance from 0 to 10, to assess readiness and to open the door to a discussion about barriers. I also normalize the injection process and explain that most patients find it easier than expected.
Life happens, and sometimes an appointment needs to be missed, so I reiterate that while reducing treatment lowers the overall benefit, it is not harmful. I make it a point to emphasize the long-term mindset: this is a marathon, not a sprint. If patients truly understand the benefit of treatment and feel that we are on this journey together, I have found that they are more likely to continue with treatment.
Leading With Empathy
My advice to fellow practitioners who are struggling with patient adherence is to lead treatment conversations with empathy and active listening. Make sure to understand what barriers exist for patients and what can be done to alleviate some of that stress. Validate why it is important to continue treatment. For patients to believe in it, practitioners must believe in the data.
1. Heier JS, Lad EM, Holz FG, et al. Pegcetacoplan for the treatment of geographic atrophy secondary to age-related macular degeneration (OAKS and DERBY): two multicentre, randomised, double-masked, sham-controlled, phase 3 trials. Lancet. 2023;402:1434-1448.
2. Khanani AM, Patel SS, Staurenghi G, et al; GATHER2 trial investigators. Efficacy and safety of avacincaptad pegol in patients with geographic atrophy (GATHER2): 12-month results from a randomised, double-masked, phase 3 trial. Lancet. 2023;402(10411):1449-1458.
3. Wykoff CC, Holz FG, Chiang A, et al; OAKS, DERBY, and GALE Investigators. Pegcetacoplan treatment for geographic atrophy in age-related macular degeneration over 36 months: data from OAKS, DERBY, and GALE. Am J Ophthalmol. 2025;276:350-364.
4. Gahn G, Kaiser PK, Khanani AM, et al. The 18-month efficacy of avacincaptad pegol in geographic atrophy: pooled results from GATHER1 and GATHER2. Invest Ophthalmol Vis Sci. 2024;65(7):4400.
