Despite sometimes having good visual acuity, patients with geographic atrophy (GA) can often suffer greatly in their daily lives. For example, a patient with GA might be able to read 20/25 on the eye chart, and the retina specialist might consider this to be acceptable. However, the GA patient most likely will experience impactful limitations, such as difficulty reading a menu in a poorly lit restaurant or discomfort driving in unfamiliar areas. The entire retina community is currently endeavoring to find treatments for GA, and so a better understanding of the patient experience is important in this journey.

RETINAL PHYSICIAN: WHAT ARE THE EFFECTS OF GEOGRAPHIC ATROPHY ON PATIENTS?

NANCY HOLEKAMP, MD: The Global Geographic Atrophy Insights Survey (GAINS) was conducted to try to answer this question. It was sponsored by Apellis and administered by the Harris poll in 2021. It surveyed 203 patients in 9 countries who self-identified as having GA.¹ Respondents self-reported that they had been diagnosed with age-related macular degeneration (AMD) and had dry AMD in at least 1 eye. They must also have indicated that they have advanced atrophic AMD, advanced/late/late-stage dry AMD, or GA in 1 or both eyes. Included patients must have been currently experiencing at least 3 GA symptoms and needed to meet additional lifestyle requirements. The survey asked respondents about how GA affected their lives. The mean age of respondents was 70 years, and respondents self-reported that they had been diagnosed with advanced dry macular degeneration in at least 1 eye.

The survey results revealed that GA is a more devastating disease than visual acuity can capture. Many respondents said that prior to diagnosis, they thought losing vision was part of normal aging, yet we know that many older individuals maintain good vision for their entire lives. Eighty-three percent of respondents wished that at the time of diagnosis they had understood more about their future or their prognosis. Eighty-three percent of patients said that they experienced the inability to drive at night. In 68% of patients, the impact of vision decline was worse than they expected on their quality of life and their independence. Seventy percent of patients depend on a caregiver to do normal daily activities of life. Eight out of 10 survey respondents thought the disease was progressing much faster than they expected. One in 3 respondents withdrew from normal social activities.¹

So, even though retina specialists consider GA to be a slowly progressive disease in comparison to wet AMD, the years go by fast for patients in their 70s and 80s. Patients with vision loss from GA are sometimes uncomfortable not to be able to see people’s faces. I even have a patient who told me she put her hand into a bowl of dip because she thought it was a bowl of potato chips, and those kinds of social situations can be embarrassing for people and cause them to withdraw.

RP: WHAT ARE THE IMPLICATIONS OF THESE RESULTS FOR RETINA PRACTICE?

NH: Treatment decisions should not be based exclusively on visual acuity. Retina specialists should talk to patients and consider what the patients can currently do, what they want to continue doing, what is important to them, and what they’re struggling with now. If slowing progression could help preserve patients’ daily activities, even though their vision is 20/25 or better on the eye chart, it may be worth starting therapy. When therapies for dry AMD become available, treatment paradigms will be different from those for wet AMD. Geographic atrophy treatments will not be associated with a “wow” effect on vision or our most highly utilized biomarker for treatment effectiveness, the OCT. Rather, treatments will be given and continued based solely on belief in data from large, randomized interventional clinical trials in which treatment had better results than no treatment.

Currently, it is challenging even to have important conversations about GA with an affected patient. Patients might not be visiting the retina specialist because they have been told there is no treatment available for them. Retina specialists will have to launch a community-wide education program. This happened when treatments for wet AMD first became available. Then, everyone came into retina practices for treatment, including people who had untreatable disciform scars. The same thing is likely to happen for GA as well. Widespread public relations campaigns will help to educate the public about GA, and people will come into retina specialist offices in large numbers. Many will not be able to be treated in a meaningful way, but this influx of patients will enable retina specialists to identify those who potentially will benefit.

When those patients with GA arrive to the clinic, not only will retina specialists need to do a comprehensive retinal examination, which could include visual acuity, OCT, fundus autofluorescence, or a near-infrared photography of the lesion, they will have to incorporate a detailed conversation with the patient about how the disease has affected their lives, the untreated prognosis, the potential risks and benefits of treatment, and whether patients want to have regular injections. This value proposition must be individualized to every patient. The patient will have a choice: unrelenting progressive decline or injections to slow the rate of progression. If it’s explained in that way, many patients, but certainly not all, will choose treatment. Also, once they start injections, GA patients will need periodic monitoring because of the small rate of conversion to wet AMD.

RP: HOW DOES TREATMENT COMPLIANCE FIT INTO THIS PICTURE?

NH: Real-world experience tells us that compliance is the primary challenge for wet AMD treatment — and those therapies actually improve vision. However, treating GA will be similar to treating glaucoma in that glaucoma drops and GA treatments will not improve vision, they will only slow the rate of progression. When people diagnosed with glaucoma are asked to take drops, the compliance rate is abysmal. There are estimates as low as 10% for adhering to the treatment regimen with glaucoma drops. However, in glaucoma, the patients who are most compliant are the ones who have already lost significant vision in one or both eyes or can tell that over time they’re losing vision. This will be true for GA patients as well. Patients with GA who have already lost vision in one eye and are receiving injections in the better-seeing fellow eye to preserve vision will be highly motivated to stay on therapy.

Retina specialists will be an important part of motivating patients to be compliant with monthly or every-other-month injections. They will need to be excellent educators and to forge therapeutic relationships with patients. A study published in 2022 looked at barriers to and motivators for wet AMD and diabetic macular edema treatment, and the top motivators for treatment were the patient-physician relationship and education about their disease.² Patients reported that the reasons they did not present for injections were fear of side effects and anxiety around having a shot in the eye. Physicians reported that they believed patients were not coming back because of travel logistics, lack of treatment effectiveness, and financial burden, but patients ranked those reasons at the very bottom. So, there’s a disconnect between why physicians think patients are not returning and the reasons that patients are actually not coming back. Patient education will help with this when it comes to therapy for GA. Retina specialists will need to help patients understand the progressive nature of GA and that it’s going to affect their quality of life. If patients are reluctant about repeated injections, part of the patient conversation can also include a reminder that more treatments are in development, whether that be sustained delivery or gene therapy, so injections may only be needed until something better comes along.

The onus for treating GA is not simply on the retina specialist, however; treatment of GA will require a team. Hospitals use teams to treat patients, and even ophthalmic refractive surgery involves a team of people providing education. Retina specialists need to follow suit and develop a team in which every member communicates the same message to the patient about GA. The team members can include retina technicians, scribes, ophthalmic photographers, and front-desk support staff. The result will be relationship building between the patient and everyone in the retina specialist’s office, and this will set the stage for good compliance with injections for GA.

RP: ANY CLOSING THOUGHTS?

NH: Providing patient education is just as important as measuring visual acuity or obtaining an OCT during the in-office diagnosis and management of GA. Initiating anti-complement injections that could slow the growth rate of GA will be a burden to patients and their caregivers, but it is a value proposition that may be beneficial for the right patient. Tasked with protecting and preserving the vision of patients, retina specialists will have to grow their skills for building a therapeutic patient-physician relationship to ensure good compliance for optimal outcomes. RP

Editor’s note: This article is part of a special edition of Retinal Physician that was supported by Apellis Pharmaceuticals. Authors and editors maintained editorial control for all articles in this special edition.

REFERENCES

1. Apellis. Apellis announces results from new global survey conducted by The Harris Poll revealing the emotional burden and impact on independence caused by geographic atrophy (GA). News release. April 21, 2022. Accessed November 10, 2022. https://investors.apellis.com/news-releases/news-release-details/apellis-announces-results-new-global-survey-conducted-harris
2. Giocanti-Aurégan A, García-Layana A, Peto T, et al. Drivers of and barriers to adherence to neovascular age-related macular degeneration and diabetic macular edema treatment management plans: a multi-national qualitative study. Patient Prefer Adherence. 2022;16:587-604. doi:10.2147/PPA.S347713