Patients with geographic atrophy and their caregivers would benefit from support and accommodations related to managing daily life activities and social activities, as well as their mental health, Sophie J. Bakri, M.D., said during her presentation
Geographic atrophy impacts patients’ daily activities and the mental health of patients and their caregivers, according to a presentation at the American Society of Retinal Specialists in Seattle. Geographic atrophy (GA) is late stage dry age-related macular degeneration (AMD), a condition in which layers of the macula get progressively thinner. This impacts the ability of patients to see. Geographic atrophy is responsible for about 10% to 20% of legal blindness, affecting more than 5 million people worldwide.
“The incidence and burden of geographic atrophy due to dry macular degeneration are expected to rise globally, yet there is limited research on the patient and caregiver experience,” investigator Sophie J. Bakri, M.D., chair and professor of Ophthalmology at Mayo Clinic in Rochester, Minn., said during her presentation. “In the United States and Canada, the GA burden on patients and caregivers is substantial and multifaceted compared with other ophthalmic diseases. A greater proportion of Canadian caregivers experience moderate-to-severe burden compared with U.S. caregivers, and both patients and caregivers would benefit from support and accommodations related to managing daily life activities, social activities, as well as their mental health
In this study, called MOSIAC, Bakri and her colleagues wanted to assess the burden geographic atrophy places on patients and caregivers in the United States and Canada. They surveyed 149 geographic atrophy patients (102 in the United States, 47 in Canada) and 148 unpaid caregivers (102 in the United States, 46 in Canada). Patients were over the age of 60, with geographic atrophy secondary to age-related macular degeneration in one or both eyes.
Patients were administered the National Eye Institute Visual Functioning Questionnaire. The surveys were conducted between November 2021 and October 2022.
Bakri and her colleagues found that most patients experienced visual changes related to geographic atrophy, and most patients lived with another person. Canada had a higher proportion of male caregivers and a higher proportion of working caregivers. Caregivers in the both the United States and Canada who were working reported a reduction in working hours.
Most patients report they no longer drive because of worsening eyesight due to geographic atrophy. In total, 86% of U.S. patients and 72% of Canadian patients did not drive; 95% of the non-driving patients in the United States and 97% of these patients in Canada gave up driving because of their eyesight. Those who were still driving indicated a reduction in night driving.
Patients reported receiving help from children, partners, and/or other family members. More U.S. patients reported needing daily help (68%) or a change in their living situation because of geographic atrophy (38%) than did Canadian patients (28%).
In the United States, 37% of caregivers cared for partners, while 30% cared for a parent. In Canada, 65% of caregivers reported caring for parents and 4% cared for a partner. In total, 63% of Canadian caregivers were categorized as having moderate-to-severe burden versus only 15% of U.S. caregivers. In total, 44% of U.S. caregivers and 93% Canadian caregivers were employed; time missed from work in the previous week due to caregiver responsibilities was similar.
In her presentation, Bakri said there was also an impact on mental health burden, with patients reporting they worried about their eyesight and control.
Previous research is limited, especially on caregiver burden, but the findings of the study presented at ASRS support those from earlier studies. One study, published in Clinical Ophthalmology in 2020, assessed quality of life of patients with geographic atrophy due to AMD, as well as patients with no ophthalmic condition. Led by Praveen J. Patel, M.D., MBBChir, with Moorsfield Eye Hospital in London, this study found that patients with geographic atrophy experience a poorer level of vision-related function and quality of life than their peers, especially in relation to driving. Additionally, geographic atrophy is also associated with higher healthcare-related costs, mostly direct costs attributed to diagnostic tests/procedures.
Another study published in 2021 in Clinical Ophthalmology was a literature review of quality of life and economic burden studies in geographic atrophy. It was conducted by researchers at RTI Health Solutions and Apellis Pharmaceuticals, the manufacturer of Syfovre (pegcetacoplan), which approved in February 2023.
This literature review identified 25 studies on quality of life, four on the economic burden and three on both. The review found that vision-related functioning and health-related quality of life was poor in patients with geographic atrophy. In terms of economic burden, research said there are gaps in the research. One study they identified from 2005 found that indirect costs from lost wages of patients with severe vision loss was about $24.4 billion annually.