Lost to followup: Patients with AMD skip sight-saving treatment, experience vision loss

The number of people with wet age-related macular degeneration (AMD) who fail to show up for follow-up appointments is higher than ophthalmologists feared.

According to a news release, data presented at the American Academy of Ophthalmology’s 2022 annual meeting in Chicago shows that 1 in 9 people are foregoing sight-saving eye injections. The study highlights the need to redouble efforts to educate patients about treatment and for researchers to speed up alternative treatments that require fewer follow-up visits.

The news release noted that ophthalmologists have a powerful tool to treat AMD, a leading cause of blindness among adults over the age of 50. Anti-VEGF eye injections allow more than 90 percent of patients to keep their vision, but only if they stick to their recommended treatment plan. For most people that means going to the ophthalmologist’s office for eye injections every one to three months. Failure to do so can cause irreversible vision loss. 

Ophthalmologists have long known that it’s difficult for many elderly patients to keep up with the schedule, as they struggle with other maladies and rely on others to get them to their visits. But what about people who just don’t return? Did they go to another clinic? Who are these patients? Are there certain groups of people who are more likely to skip their appointments?

To get a better idea of how many patients across the nation are skipping follow-up exams, researchers evaluated data from the IRIS Registry, the nation's largest comprehensive eye disease registry. Of 162,825 patients newly diagnosed with wet AMD between 2013 and 2015, 11 percent were lost to follow up during a four-year study period. Researchers note that the number of patients may be even higher now since the COVID-19 pandemic deterred some from coming in for regular exams.

Those most likely to be lost to follow-up were of African American or Hispanic descent, older than age 75, male, and covered by Medicaid compared with people covered by Private Insurance.

“Considering the potential for blindness, the eye care community needs to be more proactive about reminding, educating and empowering AMD patients to come in,” lead researcher and ophthalmologist, Rahul N. Khurana, MD, said in a news release. “This could mean investing in a personalized telephone reminder system or having dedicated staff to educate patients regarding the diagnosis and emphasize the importance of following up for treatment. My hope is that this research empowers patients to preserve their vision by continuing with therapy and for physicians to consider the novel ways to improve adherence for patients with AMD in the future.”