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Perceptions of Treatment for Wet AMD in British Columbia

Perceptions of Treatment for Wet AMD in British Columbia
CNIB Research
By: Chelsea Mohler, M.A., Dr. Deborah Gold and Dr. Keith Gordon
October 17, 2012
Background
CNIB Research conducted a telephone survey on behalf of the Access for Sight Impaired Consumers to learn more about what patients in British Columbia know about the current treatments for Wet AMD.  The telephone surveys were conducted from November 15, 2012, until December 19, 2012.  All clients who took part in the survey had Wet AMD, as per the requirements for the project.
Methods
The AMD survey was conducted via telephone with 157 clients aged 65 and over.  Clients from across BC were recruited, using an automatic mass call out from the National Director, Research and Program Development, CNIB.  The automatic call out was created a total of three times: once to all 2478 clients with AMD in BC in the CNIB database. Of these, 200 expressed interest initially in participating, and 157 completed the survey.  The survey was conducted by one research assistant and two volunteers from the BC CNIB office.  Each client was contacted, and invited to take part in a five minute survey to learn more about what patients in BC know about the treatments for Wet AMD.  All identifying client information was destroyed upon completion of the telephone interviews.
Results
Question 1
Have you ever been treated in British Columbia with an injection into the eye?
• One hundred and seven (68.2%) of respondents had been treated  in British Columbia with an injection into the eye
• Thirty-Nine (24.8%) of respondents had not received an injection into the eye
• Eleven (7.0%) of respondents did not know if they had received treatment in British Columbia with an injection into the eye
• Answered Question: 157.
Question 2
Did your doctor explain, to your satisfaction, what condition you were being treated for?
(only those who stated they received an injection in Question 1, proceeded with the remainder of the survey)
• Fifty-six (53.8%) of respondents felt their condition had been explained by their doctor to their satisfaction
• Forty-five (43.3%) of respondents did not feel their condition had been explained to their satisfaction
• Three (2.9%) of respondents did not know.
• Answered Question: 104.
Question 3
Did your doctor explain that there was more than one drug option for your condition?
• Thirty-nine (37.5%) of respondents stated their doctor had explained there was more than one drug option for their condition.
• Sixty-three (60.6%) of respondents stated their doctor did not explain there was more than one drug option for their condition.
• Two (1.9%) of respondents did not know.
• Answered Question: 104.
Question 4
Did your doctor tell you that one of the drugs he or she might use is not approved by Health Canada for the condition?
• Twenty (19.2%) of respondents were told one of the drugs that may be used to treat their condition was not approved by Health Canada.
• Eighty (76.9%) of respondents were not told one of the drugs that may be used to treat their condition was not approved by Health Canada.
• Four (3.8%) of respondents did not know if they had been told.
• Answered Question: 104.
Question 5
Did your doctor give you the choice of the drug you were treated with?
• Twenty-five (24%) of respondents were given the choice of the drug they were treated with.
• Seventy-six (73.1%) of respondents were not given the choice of the drug they were treated with.
• Three (2.9%) of respondents did not know if they’d been given a choice.
• Answered Question: 104
Question 6
Did your doctor tell you which drug he or she was treating you with?
• Fifty-one (49%) of respondents were told which drug they were being treated with.
• Forty-Nine (47.1%) of respondents were not told which drug they were being treated with.
• Four (3.8%) of respondents did not know if they had been told which drug they were being treated with.
• Answered Question: 104.
Question 7
Which drug were you treated with?
• Thirty-five (33.7%) of respondents were treated with Avastin.
• Twenty-six (25%) of respondents were treated with Lucentis.
• Forty-two (40.4%) of respondents did not know which drug they were being treated with.
• One respondent stated they were being treated with a drug other than Avastin or Lucentis.
• Answered Question: 104.
Question 8
Did you experience any side effects or any other medical conditions following your treatment?
• Twenty-nine (28.2%) of respondents experienced side effects following their treatment.
• Fifty-six (54.4%) of respondents did not experience any side effects.
• Eighteen (17.5%) of respondents did not know.
• Answered question: 103.
Question 9
If so, can you tell me what they were?
• Of the 29 respondents who had experienced side effects, they included:
• Eye pain (8)
• Dizziness (5)
• Blurred vision (4)
• Headaches after the injection into the eye (3)
• Bleeding in the eye (3)
• Floaters   (3)
• Lost vision/temporary blindness (2)
• Chest pain (1)
• Unexplained hospitalization (1)                                                                                                                                                                                                                                          
Summary
This study shows that a significant number of patients with AMD in British Columbia are not receiving a full explanation from their ophthalmologists about their medications.
 In particular:
• About half of all respondents did not feel that their condition had been explained by their ophthalmologist to their satisfaction.
• 60%  of respondents said that their doctor did not explain that there was more than one drug option for their treatment
• 77%  of respondents said they were not told that one of the drug options was not approved by Health Canada
• 73% of respondents said they were not given a choice as to what drug they were to receive for their AMD treatment
• 47%  were not told which drug they were being treated with.
• When asked to name the drug with which they were being treated, 34% of respondents said Avastin; 25% Lucentis and 40% said they did not know the name of the drug even after undergoing treatment for some time
• When respondents were asked whether they had experienced any side effects from their medications, 28% said that they had. The side effects were mainly ocular in nature and were short term. One respondent said that they had experienced chest pain but wasn’t sure if it was treatment related, and one respondent was admitted to hospital but wasn’t sure of the reason for the admission.
Discussion
The results of this survey suggest that most patients receiving anti-VEGF treatments in British Columbia perceive a need for more information on their condition as well as the available treatment options. While this survey is inadequate to evaluate the real nature of side effects experienced by AMD treatments, it did indicate that most side effects were ocular and temporary in nature.

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