The MOSAIC Study: A clinical and humanistic burden of illness study among patients with geographic atrophy (GA) and their caregivers in the United States (US) and Canada (CA)

Abstract

Purpose : To characterize the burden of GA in patients and caregivers in the US and CA

Methods : We conducted a survey in the US and CA with 149 GA patients (102 in the US, 47 in CA) and 148 unpaid caregivers of GA patients (102 in the US, 46 in CA).

Results : There was a higher proportion of male patients in CA than in the US (62% vs. 43%), and the mean (standard deviation, SD) age was lower in the US (68 [4]) than in CA (73 [5]). Patients were mostly retired (77% in the US, 81% in CA). Mean (SD) time from GA diagnosis was 6.3 (5.2) and 5.3 (3.6) years in the US and CA, respectively. Visual changes due to GA were reported in both eyes by 43% of US patients and 47% of CA patients. Patients reported receiving help from children (41% in the US, 34% in CA), partners (39% in the US, 47% in CA), and/or other family members (39% in the US, 32% in CA). Mean (SD) NEI VFQ-39 composite scores were comparable in both countries (44.6 [20.2] in the US and 48.3 [21.3] in CA), indicating similar vision-related quality of life. More US patients reported needing daily help (68%) or a change in their living situation because of GA (38%) than did CA patients (38% and 28%, respectively). 86% of US patients and 72% of CA patients did not drive; 95% and 97% of non-drivers gave up driving because of their eyesight in the US and CA, respectively.
There was a higher proportion of male caregivers in CA than in the US (61% vs. 47%), and the mean (SD) age was similar in both countries (46 [15] in the US and 44 [11] in CA). In the US, caregivers mostly reported caring for their partner (37%) or a parent (30%) while in CA they mostly reported caring for their parent (65%) or a grandparent (26%). 63% of CA caregivers were categorized as having moderate to severe burden vs. only 15% of US caregivers [per Zarit Burden Interview (ZBI)]. 44% and 93% of US and CA caregivers were employed, respectively; time missed from work in the previous week due to caregiver responsibilities was similar (mean [SD] of 3 [6] in the US and 3 [3] hours in CA).
US dyad data (n=93) showed that the burden of patients and caregivers was moderately correlated with a correlation of -0.63 between NEI VFQ-39 composite score and ZBI score.

Conclusions : These results highlight the substantial burden of GA on patients and their caregivers in the US and CA.

This abstract was presented at the 2023 ARVO Annual Meeting, held in New Orleans, LA, April 23-27, 2023.