Alzheimer's Survey - Aduhelm (aducanumab)

The Alzheimer Society of Canada is looking for individuals living with Alzheimer's disease, including mild cognitive impairment (MCI), and individuals who have been treated with Aduhelm (aducanumab) to talk about their experience.

The Canadian Agency for Drugs and Technologies in Health (CADTH) makes recommendations about whether provincial health plans should pay for drugs. CADTH will soon be reviewing the use of Aduhelm (aducanumab) to treat Alzheimer's disease.

The Alzheimer Society will be making a submission to CADTH to ensure that the voices of people with lived experience are represented and considered during the review process. We would like to speak with people with Alzheimer's disease or MCI and people who have treatment experience with Aduhelm (aducanumab).

You do not need to live in Canada to respond to this survey.

Caregivers are welcome to assist the person they care for when completing this survey (please answer from their perspective). We also welcome input from caregivers for people with Alzheimer's disease or MCI who were treated with Aduhelm (aducanumab). If the person for whom you are caring is unable to answer these questions, a survey for caregivers can be found at: https://www.surveymonkey.com/r/adulhelmcaregiver

Please contact Sian Lockwood at SLockwood@alzheimer.ca if you would be willing to participate in a brief telephone interview.

At this time, people living with other dementias such as vascular, frontotemporal or lewy body, cannot participate in this survey.
 
We would like to thank everyone for helping to ensure that the voices of people with lived experience are represented in the drug funding review process.
 
Privacy Policy: To ensure privacy and confidentiality, individual responses will not be identifiable in report summaries. It is important to note that selected quotations may be used for the final submission to government agencies without reference to any person's name or any other information that could lead to identifying any specific individual.

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* 1. Do you consent to the use of your answers and quotations in Alzheimer Society documents? [Your name will not be used]

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* 2. Have you been diagnosed with Alzheimer's disease or mild cognitive impairment (MCI)?

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* 4. What clinical stage of your condition have you currently reached?

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* 5. Do you have beta amyloid pathology?

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* 6. What symptoms of Alzheimer's disease or MCI have you experienced? [Check all that apply]

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* 7. What medications have you received since your diagnosis? [Check all that apply]

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* 8. Please describe any positive experiences with these treatments (excluding Aduhelm (aducanumab)).

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* 9. Please describe any negative experiences with these treatments (excluding Aduhelm (aducanumab)).

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* 10. What side effects have you experienced as a result of treatment (excluding Aduhelm (aducanumab))? [Check all that apply]

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* 11. If you experienced treatment side effects, which did you find most difficult to tolerate?

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* 12. On a scale of 1 (not important) to 5 (very important), how important are these outcomes when treating your Alzheimer's disease or MCI?

  1 - not important 2 3 4 5 - very important
Controlling disease progression
Managing side effects
Maintaining the ability to care for myself
Preventing memory loss
Sustaining my ability to think clearly
Maintaining awareness of my surroundings
Reducing confusion and disorientation
Maintaining self-control

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* 13. On a scale of 1 (will not tolerate side effects) to 5 (will tolerate significant side effects), how willing would you be to tolerate new side effects from therapies that can delay disease progression?

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* 14. On a scale of 1 (will not tolerate side effects) to 10 (will tolerate significant side effects), how willing would you be to tolerate new side effects from therapies that can reduce the symptoms of Alzheimer's disease or MCI?

The remaining survey questions are for patients who were treated with Aduhelm (aducanumab). If you have NOT received this treatment, please proceed to Question #28.

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* 15. Have you been treated with Aduhelm (aducanumab) as a person with Alzheimer's disease or MCI?

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* 16. What dose of Aduhelm (aducanumab) did you receive?

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* 17. Did you receive any other treatment at the same time at Aduhelm (aducanumab)?

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* 18. How long were you treated with Aduhelm (aducanumab)?

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* 19. Are you still receiving Aduhelm (aducanumab) for treatment of Alzheimer's disease or MCI?

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* 20. On a scale of 1 (much worse) to 5 (much better), what has changed after taking Aduhelm (aducanumab) compared to other therapies that you received?

  1 - much worse 2 3 - no change 4 5 - much better
Controlling disease progression
Drug side effects
Maintaining quality of life
Ability to think clearly
Ability to work
Ability to sleep
Ability to drive
Ability to care for myself
Ability to perform household chores
Ability to care for children
Ability to remain focused
Ability to maintain self-control

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* 21. What side effects have you experienced while on Aduhelm (aducanumab)?

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* 22. How much can you tolerate the side effects associated with Aduhelm (aducanumab) on a scale of 1 (completely intolerable) to 5 (completely tolerable)?

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* 23. Did you have any difficulty accessing Aduhelm (aducanumab)?

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* 24. Did the need to travel to medical centres for Aduhelm (aducanumab) infusions and/or additional MRIs represent a hardship? [Check all that apply]

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* 25. Overall, what have been your positive experiences with Aduhelm (aducanumab)?

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* 26. Overall, what have been your negative experiences with Aduhelm (aducanumab)?

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* 27. Based on your personal experiences with Aduhelm (aducanumab), would you recommend it to other people with Alzheimer's disease or MCI?

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* 28. What country are you from?

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* 30. Would you be willing to participate in a telephone survey to discuss your experience with Aduhelm (aducanumab)?

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* 31. If yes, please enter your email address or phone number below.

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