Giving a patient the diagnosis of age-related macular degeneration (AMD) is not an easy task. We know that just hearing the words “macular degeneration” can cause stress, anxiety, and fear for our patients, who often associate the disease with inevitable blindness. Even more difficult is giving the diagnosis of the most advanced form of dry AMD, geographic atrophy (GA). This diagnosis carries a high risk of vision loss, with the average onset of central vision loss from time of diagnosis reported to be around 2.5 years.1
In the past, while the diagnosis of GA was difficult to give, management of this disease was fairly straightforward, since there was no treatment specific to GA. A patient could only make lifestyle modifications, consider vitamin supplementation, wait to see how the disease progressed, and pursue low vision options once visual function ultimately declined.
There are now 2 novel intravitreal medications, both targeting the complement system, that are approved to slow the progression of GA. This gives hope to patients but also makes the patient conversation more difficult as we navigate how to discuss the disease and the treatment options. Although optometrists are not administering treatment themselves, it’s crucial for us to provide our patients with a firm understanding of GA and the basic principles of the options available to them when they are referred to a retina specialist. This can greatly help patients to make informed decisions that are best for them, and to not feel overwhelmed by the options.
Addressing the questions and topics below (in plain language) will help to navigate the GA conversation with your patients and set them up for success at their referral appointments. Keep in mind these are general responses that should always be tailored to a specific patient scenario or to your own comfort level with discussing the diagnosis and management of AMD and GA.
What is GA?
GA is the most severe form of dry AMD, in which the central portion of the retina (or the inside of your eye) degenerates so much that it forms blind spots in a person’s vision. These blinds spots are called GA. A picture can be worth a thousand words in this scenario: Fundus autofluorescence in particular helps to point out GA lesions in black and white for patients to better understand (see Figure 1).
How does GA affect my vision?
Early on, GA may not noticeably impact vision. Initial symptoms include difficulty with nighttime driving, trouble seeing in poor illumination, or trouble reading fine print. As the disease progresses, patients with GA may notice distortions in their vision where straight objects seem curved or bent. Some patients may start to be impacted by small blind spots in their vision, feeling that letters are “jumping around on the page” or that objects in their vision seem to go missing. Driving, even during the day, can become difficult, and some patients may become unable to drive at all. Ultimately, GA can leave a large blind spot and make it impossible to see details, even to the extent of not being able to recognize faces.
It is important to note that while GA can have a severe impact on the central vision, it does not cause the patient to go completely blind. Patients maintain their peripheral vision, and many maintain their independence with tools such as low vision training.
What treatments are available?
There are now treatments to slow the progression of GA. These do not reverse GA or stop it entirely, but they slow down its progression to buy patients more time with the vision that they have. It is important to understand that these treatments will not make vision better. Even with treatment, the disease will likely worsen with time, but it will do so less quickly.
Treatments require injections of medication into the eye. These are ongoing, long-term treatments that are done every month to every other month depending on the specialist’s preference.
Do these injections hurt?
Although no one considers getting an injection in their eye to be fun, the vast majority of patients tolerate injections very well. Many patients describe feeling pressure during the procedure, but not pain. They often experience eye irritation after the injection, similar to getting sand or shampoo in the eye. This is typically short-lived, with most feeling better the following day. While the thought of having an eye injection sounds intimidating, I would not let that be the deciding factor in whether to pursue treatment.
Doc, what would you do?
This is always the most difficult question to answer, and one I think about all the time. It’s hard to imagine what my priorities and goals will be when I am at an age to be diagnosed with AMD. This is a decision that takes into account numerous factors regarding the status of the GA (eg, location, laterality, ocular co-morbidities, presence or absence of high-risk biomarkers) as well as the patient’s age, systemic health, goals, and ultimate willingness to pursue treatment. The treatments we have available are obviously not perfect, as they do not cure the disease, but they are better than what we had just a few years ago. Patients with GA deserve to be well-informed regarding their treatment options and referred to a specialist if appropriate to further discuss.
Conversations about geographic atrophy are never easy, but they are more important than ever. With new treatment options available, patients now have hope in slowing the progression of this disease. As optometrists, our role is to educate and guide patients through their diagnosis with empathy, clarity, and up-to-date information. Empowering patients to understand GA and what treatment entails can help them approach their retina specialist appointments with confidence and a sense of control over their care.
Reference
- Keenan TD, Agrón E, Domalpally A, et al. Progression of geographic atrophy in age-related macular degeneration: AREDS2 report number 16. Ophthalmology. 2018;125(12):1913-1928. doi:10.1016/j.ophtha.2018.05.028
