OBJECTIVES:

Optimal real-world outcomes in neovascular age-related macular degeneration (nAMD) and diabetic macular edema (DME) require frequent and potentially burdensome visits for patients and their caregivers. This study aimed to understand the caregiver perspective on treatment burden, barriers and the impact of caregiving, with a particular focus on the demands of frequent anti-vascular endothelial growth factor (anti-VEGF) intravitreal injection treatment.

METHODS:

Caregivers of adult nAMD/DME patients treated with anti-VEGF injections were enrolled from 21 clinical sites in the USA, UK and Canada. Caregivers completed a cross-sectional survey comprising de novo questions and a self-reported outcome instrument.

RESULTS:

Overall, 18 DME and 44 nAMD caregivers completed surveys. On average, caregivers provided care 4.3±3.0 days/week, 4.0±4.3 hours/day. Caregivers reported supporting patients on a diverse array of tasks including transportation to doctors' appointments, providing emotional support, and helping with shopping and household chores. Twelve (67%) DME and 30 (68%) nAMD caregivers reported at least one barrier that prevented patients from receiving treatment or attending visits. Barriers were mainly related to the COVID-19 pandemic restrictions, particularly preventing caregivers from accompanying patients to appointments, clinic/appointment factors (distance, difficulty in scheduling appointments, other medical appointments priority, appointment duration), and social/health related factors (caregiver’s availability, care recipient’s reduced mobility/physical limitations). Overall, 13/22 (59%) working caregivers reported an impact on work absenteeism due to helping with treatment appointments. Based on the Caregiver Reaction Assessment scores, caregivers experienced a moderate impact on schedule disruptions, and a milder impact on financial problems, lack of family support, health and self-esteem in relation to their caregiving situation.

CONCLUSIONS:

Caregivers devote significant time to caring for the recipient, with the greatest impact on caregiver schedule disruptions and absenteeism for those working. More durable treatments with longer intervals and fewer appointments may alleviate some of that burden.