Abstract
Purpose :
GA, an advanced form of age-related macular degeneration (AMD), is a leading cause of vision loss in the elderly. There is limited research on the experience of living with the disease. MOSAIC was a mixed-methods study of the clinical, humanistic, and economic burden of GA on patients and their unpaid caregivers.
Methods :
A total of 81 patients with GA (35 in Germany, 34 in the UK, and 12 in France) participated between January and July 2022. The National Eye Institute Visual Function Questionnaire (NEI VFQ), the Work Productivity and Activity Impairment questionnaire: Specific Health Problem (WPAI:SHP), and 42 novel items specifically developed for the survey were administered. Correlations were calculated using Spearman correlation coefficient between continuous variables, polyserial Spearman correlation coefficient between continuous and categorical variables and Polychoric correlation coefficient between categorical variables. Results reported are European pooled.
Results :
Patient sample was 53% female, with a median (interquartile range [IQR]) age of 78 (71-82) years, and was mostly retired (89%) people. Median (IQR) age at diagnosis was 69 (62-76) years, with visual changes due to GA reported by 72% of patients in both eyes. In this patient group, 37% needed daily help due to GA, 49% ranked loss of independence as their top concern. Seventy-four percent (74%) of patients did not drive, and for those who did, difficulty increased at night and in difficult conditions. Therefore, the NEI VFQ-25 driving subscale score was correlated with inability to shop independently (r=0.71, p<0.0001), to visit people (r=0.57, p<0.0001), and to go out for recreational activities (r=0.47, r<0.0001). Loss of their ability to read was reported in 30% of patients, and correlated with the NEI VFQ-25 vision specific mental health subscale score (r=0.56, p<0.0001).
Conclusions :
There is substantial multifaceted burden of GA on patients and their caregivers in Europe, affecting patient independence. These findings highlight the impact GA has on daily activities of patients and its mental health implications.
This abstract was presented at the 2024 ARVO Annual Meeting, held in Seattle, WA, May 5-9, 2024.