Theodore Leng, MD, MS, discusses his team's IRIS registry findings suggesting a need for quantifying how vision-loss patients are impacted by functional or quality-of-life measures.
Patient-reported outcomes (PROs) as well as measures and anecdotes of vision-related quality of life are uncommonly documented by ophthalmologists in electronic health records (EHRs) during appointments for geographic atrophy (GA) care.
In a new study of data from the IRIS Registry, presented at the Association for Research in Vision and Ophthalmology (ARVO) 2022 Meeting this week, a team of US investigators reported that patient-reported reading and driving concepts—as well as incidence of anxiety or depression—were infrequently reported in the EHR of patients with GA.
The findings point to issues within the field’s standard method of medical record documentation, a growing rate of patients with the increasingly burdensome form of vision loss, and the need for greater patient-reported outcomes in clinical trials for burgeoning investigative drug classes being considered for the currently sparse GA market.
In an interview with HCPLive during ARVO 2022, study author Theodore Leng, MD, MS, associate professor of ophthalmology at Stanford University, discussed the impact of the Apellis-funded preliminary outcome analysis—which come amid growing cases of GA and its preceding condition dry age-related macular degeneration (AMD), and prior to US Food and Drug Administration (FDA) submission of potential first-in-class inhibitor therapies for the patient population from companies including Apellis.
“GA is a really interesting disease state, because it often doesn’t have any sort of measurable—by traditional means—impact until late in the disease,” Leng said. “So normally we measure the visual acuity…but until the geographic atrophy actually hits the center of the macula and the fovea, that number might not change at all much during the course of disease.”
What Leng has observed is patients describing declines in “functional vision,” by reference to reading or driving capability. But few methods quantifying those issues currently exist.
“As we look at novel therapeutics that may emerge in the coming months to years in retina, we need to be aware of these more qualitative or fuzzy aspects of visual function which are really important and we’re not measuring right now in the clinic,” Leng said.
Regarding the ophthalmologists’ role in addressing and facilitating care to these patient-reported outcomes, Leng stressed the data-proven collaboration between his peers and low-vision specialists: patients with GA were recommended to such consultations on 74% of all observed notes that included patient-reported low vision.
“We do rely on our colleagues in low vision to address a lot of these issues from a functional, interventional standpoint,” Leng explained. “As more of the population develops advanced macular disease, we may be running out of bandwidth in their clinics as well. Currently in my area, it’s about a 6-month wait for an initial consultation with low-vision services here in the Bay Area.”
The study, “Characterizing real-world functional outcomes in patients with geographic atrophy: An IRIS Registry Analysis,” was presented at ARVO 2022.