Did you know that age-related macular degeneration (AMD) is the leading cause of vision loss in people over the age of 55?
The most common form of the disease is called “dry” AMD and is characterized by the gradual loss of central vision. Sometimes, this dry form will progress into the wet form of AMD, which is when most vision loss occurs.
What is it like to live with wet-AMD in Canada? We asked you! Thank you to everyone who took the time to answer our online AMD patient survey. We circulated the survey across Canada to people living with AMD in June, 2015. To date, we’ve received 139 responses.
At the FFB, we depend on this information because it enables us to provide patient evidence to government decision makers who are evaluating the need for sight-saving drugs and the effectiveness of different treatments.
Today, we are publishing the summary results of the AMD patient survey. In this initial online publication, we have removed patients’ personal comments and testimonials to protect their privacy. Publicly sharing patient experiences is critically important because it raises awareness about what it is like to live with a blinding eye disease. This knowledge is the foundation for our advocacy work. At the FFB, we collaborate with the CNIB and the Canadian Council of the Blind (CCB) to ensure that patients’ perspectives and experiences are factored into government decisions about vision health.
This data will be very helpful during our upcoming meetings with the Government of Ontario about future coverage for Anti-VEGF drugs – and for future meetings with other provincial governments.
AMD SURVEY RESULTS
1. What are the daily challenges of living with AMD?
a) Difficulty reading: 65.6%
b) Frequent visits to eye doctor: 44.7%
c) Other: 40.3%
d) Not able to drive: 28.3%
e) Depression: 26.8%
f) Difficulty cooking: 16.4%
g) General mobility challenges: 4.4%
2. Are there activities that you find particularly difficult or can no longer do?
a) Reading: 54.2%
b) Driving: 43.9%
c) Other: 43.9%
d) Traveling: 28.9%
e) Housework: 16.8%
f) Cooking: 11.2%
3. Are you currently receiving injections to treat wet-AMD?
4. Do you know which type of drug you are currently receiving for wet-AMD?
a) Ranibizumab (Lucentis): 39.3%
b) Nothing: 31.1%
c) Aflibercept (Eylea): 13.1%
d) Bevacizumab (Avastin): 10.6%
e) Don’t know: 8.2%
5. Have you used other treatments in the past for wet-AMD?
a) Other: 52.4%
b) Ranibizumab (Lucentis): 30.6%
c) Aflibercept (Eylea): 3.96%
d) Bevacizumab (Avastin): 27.7%
e) Don’t know: 8.9%
6. Do you feel that your current wet-AMD treatment is working for you?
Not Sure: 12.4%
7. Have you ever experienced any of the following side-effects with your wet-AMD treatment?
a) Floaters: 48%
b) Blurred Vision: 36.2%
c) Other: 35.2%
d) Eye pain: 34.3%
e) Bleeding in the eye: 33.3%
f) Headaches after the injection into the eye: 12.7%
g) Dizziness: 7.8%
h) Lost vision/temporary blindness: 7.8%
i) Unexplained hospitalization: 0%
j) Chest pain: 0%
8. Have negative side-effects ever led you to look for different treatment options?
9. Have you ever experienced any challenges with accessing treatments for your wet-AMD?
10. Does your treatment schedule affect other members in your family?