Disease Burden and Tools to Manage Geographic Atrophy

Eleonora M. Lad, MD, PhD: We talked about the disease burden, and Nancy, you brought up how impaired these patients are. What is the impact of the disease burden to the patients, caregivers, and society in general?

Nancy M. Holekamp, MD, FASRS: For many of our patients this is their only health problem, so they’re vibrant and active in their late 70s and early 80s, and then they realize that they’re slowly losing vision. This is a relentless progressive disease that has no treatment at the present time. One of the burdens to patients is losing the ability to read for pleasure, as I mentioned. We know that patients then lose the ability to drive, and in many areas of the country that don’t have good public transportation, this is isolating. They lose their ability to read and drive and then endure depression. It affects almost every aspect of life, including family life, where caregivers now must step in and help patients with many of their normal daily activities. It’s a huge burden on quality of life for patients affected with this advanced form of AMD [age-related macular degeneration].

Eleonora M. Lad, MD, PhD: We’ve talked a bit about how the disease impacts a patient’s independence, mental well-being, driving ability, and facial recognition, but what tools do we have available for patients with GA [geographic atrophy] to help them carry out their daily activities? And what advice do you have for physicians, Jay, to help these patients to regain or retain their confidence?

Jayanth Sridhar, MD: That’s a great question, and Nancy, you brought up the point about low vision; I think that’s something we still underutilize as a field. We have specialists who are there for these patients and have tools and ways that they can compensate. I think we forget, we have busy clinics, and we’re seeing these patients, that that is an option. It’s important to start that process early, given the progressive nature of the disease, to start that education process in terms of the tools available. We’re very fortunate, and our patients are more fortunate than they used to be. We have tablets and screens, and many of our patients are transferring to media where they can enlarge print on a tablet, versus 20, 30 years ago when they had to read a newspaper, and there was no real way around that besides a large print textbook; tablets made a big difference. There are also a lot of audio tools on our smartphones and devices that help patients function. A lot of it is just educating those patients and getting them to a low-vision provider or a resource center, is a good way to make that a centralized process rather than slightly patchier.

David R. Lally, MD: I would agree, the technology is changing fast in low vision, and many of us retina specialists are not keeping up to date with these low-vision assistance visual tools. We should be using the assistance of these low-vision specialists who are keeping up to date on the new technology that’s coming out annually that might benefit our patients’ lives. The other thing I would add is, when you have this disease, it can affect mental health too. There have been studies showing that it impacts, not just their activities of daily living, but the mental health and well-being of the patient. So, checking in with their mental health and making sure they have resources and connections to receive services there, is important too.

Nancy M. Holekamp, MD, FASRS: Let me add one thing if I could, and that is that these patients know that they’re losing vision, but they need reassurance that they will never be completely blind. Blind is a terrible word, because we know that they will likely progress, if they live long enough, to legal blindness, but legal blindness is never total blindness. You’d be surprised at how many people who realize they have a disease affecting the retina think they’re going to wake up blind, and that doesn’t happen. Reassuring patients that they will never be in the dark stone-cold blind is very important in managing expectations and coping skills.

Jayanth Sridhar, MD: That’s a fantastic point, Nancy, and tying into Jay’s point about depression, that lack of knowledge, and maybe the fear is what drives a lot of that. The other thing we must consider is their general physical health in terms of, if they have lower vision over time, avoiding falls at home, and prepping the house. These are things we don’t talk about a lot as a community, but this is a major cause of why these patients have higher morbidity, mortality, and reduced quality of life and reduced life scores if you look at major trials. That’s where, again, having some guidance in terms of the counseling, the resources for their vision, but also the resources for preparing the rest of their life, so they can have a safer life around them.

Transcript edited for clarity