Abstract
Purpose :
Age-related macular degeneration (AMD) is the leading cause of vision loss in people over the age of 55. Approximately 2.5 million Canadians have AMD with nearly 180,000 experiencing vision loss. Given Canada’s aging population, these numbers will continue to increase. This study aims to understand the physical, psychological and practical challenges faced by those with lived AMD experience and to identify areas of need and reform from a medical, health policy and social care perspective.
Methods :
This sequential mixed method study comprised an online survey of Canadians living with AMD. Survey data fields included demographic information, self-reported vision, treatment experiences and goals, and disease impact on social functioning. A subset of respondents also participated in a telephone interviews to more deeply explore the burden of their condition.
Results :
Between January to June 2020, 337 individuals (mean age = 63.5; male = 47.5%) participated in our survey. Respondents identified having wet (47.1%), dry (37.7%) or wet and dry (12.8%) AMD. Up to 80% of respondents reported that sight loss resulting from AMD affected their ability to do at least one daily activity. Having AMD placed a significant psychological burden on respondents, most notably through anxiety that their condition would worsen (77%). A significant majority of survey participants (75.4%) received injections as treatment for AMD with 46% being satisfied with their treatment. One-fifth of respondents who received injections either felt they were not beneficial or were unsure. Almost one-third of respondents (32.1%) indicated missing at least one injection appointment in the past year, with barriers including the inability to find someone to accompany them to (39.5%), difficulty travelling to (34.6%) or inability to afford (30.9%) the appointment. A large group of respondents also underscored anxiety about the injection (38.2%) as the most difficult part of the appointment.
Conclusions :
This study paints a detailed picture of the experiences of the AMD community in Canada, including its support network, the impact of vision loss on respondents’ daily activities and emotional wellbeing and their experience with treatment. This data will help better support patient needs and understand barriers to treatment compliance.
This abstract was presented at the 2022 ARVO Annual Meeting, held in Denver, CO, May 1-4, 2022, and virtually.