Patient-, Caregiver-, and Eye Care Professional-reported Burden of Geographic Atrophy Secondary to Age-related Macular Degeneration

Abstract

Objective Geographic atrophy (GA) is a progressive, irreversible advanced form of age-related macular degeneration. There is limited information on the burden of illness of GA from patient, caregiver, and eye care professional perspectives. This study identifies key factors that should be included for assessment in future studies of patients with GA. Methods In this cross-sectional qualitative study, patients with symptomatic GA (n = 8), their caregivers (n = 6), and eye care professionals who treat patients with GA (n = 5) were interviewed at US sites. Interview guides were designed to evaluate the understanding of the disease, costs and burden of illness, use of vision aids or services, and impact on emotional or psychological well-being and on daily activities. Results Half of the patients mentioned social, psychological, or helplessness issues. Patients reported the impact of GA on sports and outdoor hobbies, meals or food preparation, religious activities, and long-distance travel. Patients reported having stopped driving or changing driving patterns as a major concern. 38% of all patients reported previously modifying their work schedules due to vision impairment. All patients reported the use of at least one vision aid, with 88% of patients purchasing the aids out of pocket. Caregivers reported modifying their schedules to provide assistance as needed and expressed frustration over their inability to improve patients’ health. Eye care professionals noted the emotional impact of vision loss, accidents, and injuries, and identified mental health as a key topic for patients with GA. Conclusions Although limited by size, this study indicates that GA has a major negative impact on patients’ and caregivers’ social functioning and health-related quality of life. This study has identified indirect resource use, including caregiving needs, and direct patient out-of-pocket costs as factors relevant to patients with GA. Future larger studies are needed to further characterize the burden of illness of GA for patients and caregivers.