Abstract
Purpose :
Neovascular age-related macular degeneration (nAMD) and diabetic macular edema (DME) are conditions which can lead to irreversible vision loss if treated sub-optimally. Anti-Vascular Endothelial Growth Factor (VEGF) Intravitreal injection (IVT) is current standard of care for people with nAMD and DME. Frequent injections can cause considerable burden and productivity loss on those receiving IVT, and their caregivers. We investigated the burden of IVT for nAMD and DME on patients and their caregivers.
Methods :
A cross-sectional survey of people with nAMD/DME and caregivers residing in the US was conducted between September and December 2022. Questions focused on demographics, treatments received for nAMD/DME, treatment schedules, visits made to health services to receive (or to accompany someone to receive) treatment and assessment of caregiver burden.
Results :
Data were collected from 75 people with nAMD (n=52), DME (n=20), or both (n=3) and 82 caregivers of people with nAMD (n=34), DME (n=13), or both (n=35). 99(63%) people were currently receiving (or were caregivers of people receiving) anti-VEGF IVT, 25(33%) people with nAMD/DME required informal caregiver support.
The modal frequency of anti-VEGF IVT was once per month (n=46, 47%). 25(56%) of IVT recipients received treatment in the past 6 months from an ophthalmologist in a hospital and 35(78%) in a private clinic. People took time off work to attend a hospital IVT visit (n=15); and to receive private clinic treatment (n=18). 48(89%) caregivers accompanied people with nAMD/DME to an ophthalmologist in a hospital and 41(76%) to a private clinic for IVT visits.
Most caregivers (n=58, 71%) spent more than 10 hours per week providing care for someone with nAMD/DME, and 20(24%) caregivers reported taking time-off paid work to provide care. 41(50%) caregivers reported retiring or reducing working hours to carry out their caregiving duties and 18(22%) reported changing their non-paid work activities due to their caregiving roles.
Conclusions :
Anti-VEGF IVT for nAMD and DME is has a considerable burden on recipients and caregivers. Most recipients visited healthcare services for anti-VEGF IVT at least monthly. A substantial proportion of caregivers had changed hours in paid and non-paid activities to provide care to people with nAMD and DME, highlighting societal productivity loss for disease management in the US.
This abstract was presented at the 2023 ARVO Annual Meeting, held in New Orleans, LA, April 23-27, 2023.