Treatment and Management of Neovascular AMD: Impact on Patients

Abstract

Purpose : Neovascular age-related macular degeneration (nAMD) is a debilitating disease that causes a serious burden for both patients and caregivers, and may lead to blindness if not consistently treated on the most appropriate treatment regimens. Anti-VEGF therapies have transformed the treatment of nAMD. This study collected data on patient-centered values, behaviors, and perceptions in relation to the long-term management of nAMD.

Methods : Patient being treated for nAMD were queried using a novel survey instrument provided to participants either directly though U.S. retinal specialist practices or collected electronically. Angiogenesis Foundation partner advocacy groups across the US also facilitated participation in this study. This study was conducted in compliance with Western Institutional Review Board.

Results : A total of 962 patient surveys were completed, with a diverse geographic representation throughout the U.S. All respondents were patients being treated for nAMD. A preponderance (68%) reported vision as their highest health priority, even in comparison to other comorbidities of an older population. The vast majority (95%) of patients agreed with the importance of having a prompt eye exam after noting vision problems; however there was a delay in diagnosis in 32% who waited more than 3 months to seek medical care. With anti-VEGF injections, 80% of patients reported stable or improved vision. 47% reported receiving monthly injections, 27% every other month, 9% less than every other month, and 19% prn treatments. 97% of patients prioritize compliance with scheduled injections. Nevertheless, 26% admitted to missing to injections or taking “time-off” from injections. Of those who missed injections, 23% reported losing vision. Challenges facing appointment compliance included transportation (32%) > anxiety (15%) > fatigue (13%) > scheduling difficultly (4%). Hardships from vision loss reported by patients include: Loss of ability to drive (84%) > loss of ability to partake in things they love (86%) > Inability to live independently (78%) > Emotional and mental distress (67%) > Stress on relationships (57%) > Loss of identity (55%).

Conclusions : This first study of AMD patients supports the prioritization of vision, treatment compliance, and the need for continued patient and caregiver education as part of the retina specialist-patient partnership.

This abstract was presented at the 2019 ARVO Annual Meeting, held in Vancouver, Canada, April 28 - May 2, 2019.