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CDA-AMC Patient and Caregiver Input Survey - Bepirovirsen for HBV

Thank you for taking part in this online survey for patients (and their caregivers) with hepatitis B (HBV). Your input is very important to us.

The Canadian Hep B PSG, Liver Canada, Action Hepatitis Canada, and the BC Hepatitis Network are seeking input from HBV patients and their caregivers about their experiences and challenges with the disease and current treatments. If you are a caregiver, please answer the questions on behalf of the patient you support.

The results of this survey will help inform our submission to Canada’s Drug Agency (CDA-AMC) for bepirovirsen, a targeted treatment of chronic hepatitis B virus (HBV).

The information you provide will help to ensure that the perspectives of the people living with and affected by HBV are considered by decision-makers at CDA-AMC who conduct reviews of new treatments and recommend whether they should be funded by government drug plans. Your input is very important.

This survey will take 15-30 minutes to complete. We ask that you complete the survey by September 2, 2026. The greater the response, the stronger the patient voice will be in the decision-making process for this treatment option.

Thank you in advance for contributing. If you have any questions, please write to us at actionhepatitiscanada@gmail.com and include "Patient Input Survey" in the subject line of the email.

PRIVACY INFORMATION

By completing this survey, you are giving consent for the Canadian Hep B PSG, Liver Canada, Action Hepatitis Canada, and the BC Hepatitis Network to use the information you provide for the CDA-AMC patient group input submission, which may be publicly posted on CDA-AMC’s website. The information and opinions you share will be reviewed and summarized, not attributed to any survey respondent.

Your name will not be associated with the information presented or published in any way. Any information you provide that can identify you will remain confidential.
Section 1: About You
1.Which category best describes you?(Required.)
2.Please select your province or territory if you live in Canada. If you reside outside of Canada, please provide the country in the box below.(Required.)
3.What age group do you fall into?(Required.)
Section 2: Patients' Experience Living with Hepatitis B

This section is for patients and caregivers to complete. If you are a caregiver, please answer the following questions on behalf of the patient.
4.How long has it been since you were diagnosed with hepatitis B?(Required.)
5.Are you currently on hepatitis B treatment?(Required.)
6.Do you have any other liver conditions, including cirrhosis?(Required.)
7.How much does hepatitis B affect the following areas of your life?(Required.)
Does not affect
Affects a little
Moderately affects
Affects quite a bit
Very much affects
Physical health
Mental health
Relationships
Family planning
Employment/career
Finances
Ability to make long-term plans
Overall quality of life
8.Which THREE impacts are the most important to you?(Required.)
9.Have you ever hidden your hepatitis B diagnosis?(Required.)
10.Have you ever experienced discrimination because of your hepatitis B diagnosis?(Required.)
11.Has it affected immigration and travel?(Required.)
12.Has it affected your willingness to seek care?(Required.)
13.What are the biggest costs you face when managing your hepatitis B?(Required.)
14.What part of the health system do you rely on most right now to manage your hepatitis B?(Required.)
15.Please describe in your own words how your hepatitis B diagnosis and day-to-day experience affect the daily lives of your loved ones. If you are a caregiver or loved one, please describe in your own words how your loved one’s HBV has affected your daily life.(Required.)
16.What would change in your life if you no longer had chronic hepatitis B?(Required.)
Section 3: Your Experience with Currently Available Treatments

If you are a caregiver, please answer the following questions on behalf of the patient. If you or the person you care for is not on antivirals, please answer "N/A".
17.For people on antivirals: How long have you been taking medication?(Required.)
18.For people on antivirals: What medication do you take?(Required.)
19.For people on antivirals: How satisfied are you?(Required.)
20.For people on antivirals: What do you like about it?(Required.)
21.For people on antivirals: What clinical needs are not met with current treatments?(Required.)
22.Do you have any side effects from your current treatment? If yes, which are the most bothersome or hardest to manage?(Required.)
23.What trade-offs, if any, do you consider when choosing a treatment?(Required.)
24.Even if your current medication is working, what concerns remain? (select as many as applicable)(Required.)
Section 4: Information About Your Experience with Bepirovirsen

Bepirovirsen is a treatment designed to reduce hepatitis B surface antigen (HBsAg). Some people in clinical studies have achieved a functional cure, meaning they maintained loss of HBsAg after treatment ended, although not everyone responds, and research is ongoing.

If you are a caregiver, please answer the following questions on behalf of the patient.
25.Do you have experience with Bepirovirsen?(Required.)
26.How have you accessed/paid for Bepirovirsen?
27.Based on personal experience with Bepirovirsen, how would you rate its effectiveness in managing your HBV?
28.What side effects, if any, have you experienced as a result of using Bepirovirsen and how manageable are ​​they?
not applicable (did not experience this side effect)
not manageable at all
slightly manageable
moderately manageable
mostly manageable
absolutely manageable
Rash
Fever
Fatigue
Muscle ache
Injection site reaction
Nausea
29.On a scale of 1-5 how would you rate your quality of life while taking Bepirovirsen?
30.How has Bepirovirsen changed, or how is it expected to change, your long-term health and well-being?
31.Would you recommend that Bepirovirsen be made accessible to Canadians living with HBV?(Required.)
32.Please tell us why you would or would not recommend that Bepirovirsen be made accessible to Canadians living with HBV.(Required.)
33.Whether you have had access to Bepirovirsen personally or not, how hopeful does this treatment make you feel?(Required.)
34.If a new treatment offered a chance of functional cure but involved temporary side effects, how willing would you be to try it?(Required.)
35.How much risk would you accept for the possibility of a functional cure?(Required.)
36.How much inconvenience would you accept for the possibility of a functional cure?(Required.)
37.Is there anything else about living with hepatitis B, Bepirovirsen, or the importance of access to new treatments that you would like us to know and include?(Required.)