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Nov 5, 2019

Living with Diabetic Macular Edema: Insights from Canadian Patients

Diabetic retinopathy (DR) is a form of vision loss associated with diabetes. The most severe form of the disease is diabetic macular edema (DME), which can occur if DR is left untreated. At this stage, damaged blood vessels at the back of the eye leak into the central part of the retina, causing irreversible damage and impaired vision.

This is a useful clinical description of DME, but it doesn’t tell us much about the actual experience of living with the disease. For example, what kinds of barriers do people with DME face? What impact does the disease have on loved ones? How does DME affect one’s emotional and psychological health? These and similar questions can only be answered by individuals who live with DME and encounter its challenges on a daily basis.

Recognizing a need for these insights, Fighting Blindness Canada launched an internal research project in 2017 focused on the physical, psychological, and socioeconomic burdens associated with DME. We surveyed Canadians with DME about their experiences with treatments, their fears about the condition worsening, the challenges they face navigating health services, and more.

Three key points emerged most clearly in our study:

DME is a serious condition that affects one’s psychological state and ability to work. More than two-thirds of patients indicated that their DME was “fairly serious” or “very serious,” and over 80% of this group reported a negative impact on daily life, the ability to work or study, and overall self-confidence.

DME is managed with a specific kind of injection, but these are often delivered monthly and can be emotionally and logistically onerous. The impact of these appointments on people living with DME was significant: 50% of working respondents reported taking at least four hours off per injection appointment, with many having to miss an entire day at work. Additionally, one-third of respondents who were treated with injections also reported not adhering to their schedules, with injection anxiety flagged as a primary reason for delaying appointments or missing them entirely.

DME is a complex disease that presents barriers to understanding its severity. Since DME is a complication arising first out of diabetes, and then out of diabetic retinopathy, it is challenging for many people to understand it, likely because they are managing another complicated and demanding disease: diabetes. Over half of the individuals we surveyed were not able to remember the name of their disease. Many were aware that they had an eye condition related to diabetes, but they were unable to recall its name. This is partially connected to the difficulty of the name itself, but it also tells us that there could be a knowledge gap at play here, and that patients might benefit from resources that provide them with clear and digestible information about DME. This is incredibly important, since we know from existing research that being knowledgeable about one’s disease status, potential progression, and treatments is linked to higher overall well-being.

These kinds of patient interactions are crucial. They provide us with insights that can help guide vision research and policy. More specifically, they can guide those endeavors in line with the needs of the individuals they are meant to serve: in this case, people living with DME.

Our study of DME doesn’t tell the whole story of the disease—no research project can. But it does give us a glimpse into some of the challenges faced by Canadians living with the disease, which is invaluable information we can use to guide activities in research, advocacy, and policymaking. Rather than undertaking these efforts in isolation, it is vital that we connect with the appropriate communities to ensure our work is heading in the right direction. In other words, we need to ensure that we put people first in all that we do.

Stay tuned to our newsfeed for updates on this study and similar projects that explore patient perspectives on glaucoma, age-related macular degeneration, and inherited retinal diseases. If you’d like to share your own experience with these or other eye diseases, visit the relevant eye disease in our Vision Care Pathways resource and click on “Share Your Experience.”

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