For many patients, an initial diagnosis of age-related macular degeneration
(AMD) tends to be accompanied by apprehension and anxiety with disease progression and the possibility of visual loss being top of mind.
An estimated 196 million people have been diagnosed with AMD as of 2020,1
and approximately 6 million of these may suffer from geographic atrophy
Considering this, it is imperative that optometrists exude confidence when discussing the disease with patients, along with making a proactive referral to ophthalmologists when medically necessary.
Having the appropriate facts and language on hand can go a long way to dispel patient confusion while gaining trust in their eyecare practitioner (ECP) to provide an appropriate course of action.
In this article, three optometrists share their patient scripts to effectively communicate with patients diagnosed with GA, including defining the disease in understandable terms, addressing common fears, and introducing treatment options.
Geographic atrophy: The basics
Geographic atrophy is a rising cause of blindness in the developed world and is especially prevalent within the Caucasian population compared to other ethnicities.3,4
GA is secondary to AMD—an acquired maculopathy characterized by drusen, retinal pigment epithelium (RPE) changes, retinal and choroidal atrophy, and/or macular neovascularization
(MNV)—and is considered an advanced stage of the dry form. Diagnosis occurs when perifoveal to central areas exhibit outer retinal and RPE atrophy, whether they be unifocal or multifocal.5
Characterized by retinal atrophy, GA is marked by progressive and irreversible loss of the RPE, choriocapillaris, and photoreceptors, with atrophic lesions
most commonly appearing perifoveally with eventual involvement centrally.6,7
While AMD most often occurs in patients older than 50 years of age, GA primarily affects patients in their 70s and 80s.8
When describing the progression of intermediate AMD to GA to patients, Jessica Haynes, OD, uses the following script:
“As the name says, ‘macular degeneration’ is a degenerative disease, which means that it gets worse with time. At its most advanced stages, it can cause the macula or the center part of the back of the eye to atrophy or waste away.
This creates patches of the macula that cannot see. These patches are called geographic atrophy, and they could get bigger over time. Most of these patches do not start in the dead center, but with time, they grow larger and eventually leave you with a blind spot in the center of your vision.
They do not affect your peripheral vision, but can make it hard to identify details such as normal-sized print and details of faces.”
Vision loss from GA
The amount of vision loss and the rate at which this may occur is obviously the biggest concern for patients. Once AMD has advanced to GA, the rate of progression is significant
, with the median time from extrafoveal to foveal GA being approximately 2.5 years.5
This disease process is irreversible. Lesions that manifest in the macula have a significant impact on visual function, as an ongoing pan-macular process is induced from a rather localized defect.8 A perifoveal lesion can cause a small scotoma in the vision; however, this could likely be surrounded by an area of photoreceptor dysfunction.6
As macular function is the area primarily affected, patients may maintain peripheral vision. However, as overall visual function declines, individuals may lose independence in activities of daily life, such as driving and computer use, and may even lead to prosopagnosia
(i.e., face blindness), which often makes social interactions challenging.6
Discussing GA-related vision loss with patients
Understandably, most patients experience a great deal of fear of losing their sight and, subsequently, their independence. The question most often asked is simply, “Will I go blind?” When asked this question, Jeffry Gerson, OD makes sure to reassure the patient first.
He goes on to discuss the importance of peripheral vision and how it is what allows you to navigate the world and effectively get around, which is key to maintaining some level of self-sufficiency. The next questions individuals ask are often, “Will I become legally blind?” and “Will I lose the ability to drive
Dr. Gerson’s answer is:
“It is fairly likely that over the course of the next few years, your central vision may be affected to the point that you might not be able to continue driving or reading effectively. However, with the newly approved medications, we can potentially prolong the time until that happens.”
When tasked with how much independence a patient will maintain, Dr. Haynes uses a straightforward yet empowering approach.
“Macular degeneration does affect many tasks of normal life—particularly those that require detailed vision. Even still, many patients with macular degeneration live independent lives.
Patients who are motivated and willing to learn new strategies often do well with low vision training to aid them in performing their daily tasks using new tools and techniques.”
Explaining the genetic component of GA
Another fear that many patients share is whether AMD and, subsequently, GA may have a downstream impact on their children’s vision as well.
“Macular degeneration is a genetic disease, so your children are at an increased risk of developing it as well. At this point, it is important for them to have yearly eye exams and tell their provider about their family history.
Their provider can discuss with them strategies to best ward off the disease [depending on the patient’s age and children’s age]. Further, there will very likely be more treatment options for this in the future.
The treatment options we are discussing with patients now regarding geographic atrophy were just FDA-approved this year, and there will likely be many more in the future—treating the disease in different ways and at earlier stages. The treatments we have today give us hope for patients now, and there is even more hope for future generations.”
Geographic atrophy treatment options
There are currently two FDA-approved treatment options for GA, both of which target the complement system.
(pegcetacoplan injection, Apellis Pharmaceuticals) 15mg/0.1mL was approved by the FDA on February 17, 2023. The recommended dosing schedule for Syfovre is once every 25 to 60 days into each affected eye and works by targeting complement C3.9
(avacincaptad pegol intravitreal solution, Iveric Bio, An Astellas Company) 2mg gained FDA approval on August 4, 2023. This prescription intravitreal injection, administered monthly, works by targeting complement C5 to possibly prevent the loss of retinal cells and photoreceptors.10-12
When describing a management protocol, Dr. Haynes keeps it simple with this script:
“There are two treatment options for GA. Both treatments involve injecting medicine into the eye. They are treatments and not a cure and depending on which you are prescribed, must be repeated monthly or every other month,and requires long-term commitment to care.
These treatments have been shown in studies to slow down the progression of GA, but do not reverse it, and do not stop it completely. They will not make your vision better, but they aim to preserve what you have for longer.”
Outlining the GA treatment process to patients
Knowing patients’ tendency to balk at the idea of an injection into the eye, Dr. Gerson takes a unique approach. After informing them that the treatment is an injection, he takes a dramatic pause 3 seconds or so and then says:
“The worst part about it is the anxiety that you feel right now. The actual procedure that you'll have done will be performed by one of my trusted ophthalmology colleagues
. Feel free to ask people who have had eye injections. Most won’t report pain—it's just that you think it will be.”
He feels it is very important to prepare patients for the fact that it is administered via needle and will only take seconds, so they do not avoid the treatment out of fear.
If asked about side effects, Sherrol Reynolds, OD, tells patients:
Typically, there are only “mild complications that can include redness, slight discomfort, or increase in eye pressure,” and assures them by stating, “You will be monitored closely to prevent more serious complications.”
Early referral of GA
As most GA is going to be initially diagnosed by an optometrist and treatments will be administered by an ophthalmologist, referral is necessary. Further, due to the disease's progressive nature, early referral is a preferred practice pattern.
Therefore, it is crucial for optometrists to form communicative relationships with comprehensive ophthalmologists and retina specialists in their community to establish a co-management network
Dr. Gerson educates patients on the fact that, though he is referring them because he thinks they are good candidates for the injection, the final treatment decision will be made by the ophthalmologist.
When outlining the process, Dr. Reynolds tells the patient:
“I work closely with the retinal specialist that I am referring you to. You will have an opportunity to ask more questions with both of us. I will co-manage with the specialist and schedule you for a 6-to-12-week follow-up evaluation.”
Additionally, Dr. Haynes suggests having the patient bring a family member to “help them navigate the decision-making process.” She also stresses the usefulness of having printed information in the office.
According to Dr. Gerson, historically, GA was thought to have a similar progression to glaucoma
, changing slowly over time. However, new research reflects that people lose functionality more rapidly than originally thought, which makes slowing progression by 20 to 30% even more substantial.
Dr. Haynes tells patients, “There is a statistic that, on average, it takes 2.5 years for patients to lose their central vision once they develop geographic atrophy. This is an average time, so some may be sooner, and some will take longer.” The treatment goal is to extend the time that individuals suffering from GA can read, drive, recognize faces, and retain some level of overall independence.
Dr. Gerson explains that while treatment doesn’t mean they will not lose their vision, it will give patients more time to enjoy the hobbies and other daily activities that currently give them pleasure. Simultaneously, patients can also figure out strategies to still enjoy themselves after the loss of central vision.
To preserve sight and quality of life, early detection
, education, referral, and treatment are essential.
Note: This article was originally published November 9, 2023. It has been updated as of February 9, 2024 to reflect the FDA approval status of both avacincaptad pegol and pegcetacoplan.