Burden of geographic atrophy high on patients, caregivers
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SEATTLE — In the U.S. and Canada, the burden of geographic atrophy on patients and caregivers is “substantial and multifaceted,” according to a study presented at the American Society of Retina Specialists annual meeting.
“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,” Sophie J. Bakri, MD, said.
The MOSAIC study investigated these aspects in 149 patients with geographic atrophy (GA) and 148 unpaid caregivers. Patients were administered the NEI Visual Function Questionnaire (NEI VFQ-39) in addition to 42 novel items and the Work Productivity and Activity Impairment Questionnaire, while the caregivers’ burden was assessed through the Zarit Burden Interview and the Caregiver Indirect and Informal Care Cost Assessment questionnaire in addition to 19 novel items.
Most patients reported significant visual and lifestyle changes due to GA.
“Most patients no longer drive due to worsening eyesight due to GA. In the United States, there were 14% of patients still driving, and in Canada, there were 28% of patients still driving. Of those still driving, most reported a reduction in night driving and driving in difficult conditions,” Bakri said.
A higher proportion of U.S. patients (68%) reported needing help every day as compared with Canadian patients (38%), but NEI VFQ-39 scores were comparably low — 44.6 in the U.S. and 48.3 in Canada — especially compared with other ophthalmic diseases.
“In central retinal artery occlusion, the score is 80, and in corneal transplant, it is 54,” Bakri said. “There was also an impact on mental health burden, with patients reporting worrying about their eyesight and a lack of control about what they did.”
Canada had a higher proportion of male caregivers and a higher proportion of working caregivers. In the U.S., more caregivers supported their partner, and in Canada, more supported their parents and grandparents. More Canadian caregivers were categorized as having a moderate to severe burden compared with U.S. caregivers.
“Both patients and caregivers would benefit from support and accommodations related to managing daily life activities, social activities as well as their mental health,” Bakri said.
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Bakri SJ, et al. The MOSAIC study: A clinical and humanistic burden of illness study among patients with geographic atrophy and their caregivers in the United States and Canada. Presented at: American Society of Retina Specialists annual meeting; July 28-Aug. 1, 2023; Seattle.
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