Title: The Burden of Glaucoma on Canadian Patients: Gaps in Understanding the Disease and its Treatments
Authors: Chad Andrews and Jennifer Pereira 
Category: Global and Public Health Ophthalmology

Purpose: Affecting over 400,000 Canadians, glaucoma is a disease of the optic nerve and one of the leading causes of blindness in North America. This study seeks to better understand the daily struggles of living with glaucoma, and to offer the resulting analysis as a framework for guiding decisions related to new treatments in Canada. Any considered treatment should significantly reduce at least one of the following burdens: physical, psychological, and socioeconomic. One of the best ways to measure these burdens and to scrutinize our own understanding of a disease is to survey patients and provide them with a platform to describe their experiences.  

Study design: Mixed-methods, cross-sectional survey study. 

Methods: Designed to collect data on the physical, psychological, financial, and other burdens associated with glaucoma, an online, IRB-approved survey was posted to Fighting Blindness Canada’s website on July 20, 2018, where it gathered responses over the course of several months. Data was analyzed for themes, patterns, and keywords.   

Results: 244 Canadian respondents self-confirmed living with glaucoma. Most patients indicated having glaucoma in “both eyes” (76%), while a minority indicated having the disease in “one eye” (18%), and the remainder selected “other.” Patients rated the “severity of vision loss resulting from your glaucoma” on a scale from 1 to 10: most indicated 1 for “no vision loss” (24%), followed by ratings of 2 (17%), 3 (14%), 4 (12%), and 8 (7%). The average of these ratings is 3.88. Patients were also asked about how serious they consider their disease to be, how often they think about it, what kinds of barriers they face, what kind of activities they find difficult, what types of treatments they take, and which treatments they are aware of. Open-ended responses were collected in each section as well, providing qualitative perspectives that heightened and, in some cases, provided context for the quantitative survey results. 

Conclusions: A review of both qualitative and quantitative data showed that, especially in the context of an overall paucity of literature on the subject, there are significant gaps in our collective understanding of glaucoma: (1) gaps in our general understanding of the burdens associated with the disease; (2) gaps in the patient’s understanding of the treatment landscape; and (3) gaps in how patients understand the specific details of their own disease and diagnosis. A discussion of these gaps is the primary focus of this presentation. 

Disclosure of Relationships: Dr. Andrews reports grants received by Fighting Blindness Canada from AGTC, Allergan, Bayer, BMO, CIBC, Glaukos, I-MED Pharma, L'Occitane en Provence, MEDEC, MeiraGTx, Novartis, RBC Foundation, Shire, Spark Therapeutics, and Specialty Pharma Solutions.

The burden of glaucoma on Canadian patients: Gaps in understanding the disease and its treatments

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