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Non-Muscle Invasive Bladder Cancer Patient Survey - Adstiladrin (nadofaragene firadenovec-vncg)

Non-Muscle Invasive Bladder Cancer Patient Survey - Adstiladrin (nadofaragene firadenovec-vncg)

Bladder Cancer Canada is looking for people with non-muscle invasive bladder cancer and people who have been treated with Adstiladrin (nadofaragene firadenovec-vncg) to talk about their experience.

The pan-Canadian Oncology Drug Review (pCODR) makes recommendations about whether provincial health plans should pay for new cancer drugs. pCODR will soon be reviewing the use of Adstiladrin (nadofaragene firadenovec-vncg) for adult patients with high-risk Bacillus Calmette-Guérin (BCG)-unresponsive non-muscle invasive bladder cancer with carcinoma in situ. Bladder Cancer Canada will be making a submission to ensure that patient voices are represented and considered during the review process. We would like to speak with patients about their experience.

Does this survey apply to you?

This survey is intended for patients with non-muscle invasive bladder cancer.

It is also important to survey a subgroup of patients who have treatment experience with Adstiladrin (nadofaragene firadenovec-vncg) as well as Bacillus Calmette-Guérin (BCG).

Please note that caregivers may answer questions on behalf of the patient where the patient is unable or unavailable.

You do not need to live in Canada to respond to this survey; we appreciate input from every patient.

We are also interested in speaking directly with people who have treatment experience with Adstiladrin. Please contact Michelle Colero, Executive Director at patients@bladdercancercanada.org or by calling 1-866-674-8889 if you would be willing to participate in a brief telephone interview.

We would like to thank everyone for helping to ensure that patient experiences are represented in the cancer drug funding review process.

Privacy Policy: To ensure patient privacy and confidentiality, individual responses will not be identifiable. It is important to note that selected quotations may be used for the final submission to government agencies without reference to patient name or any other information that could lead to identifying the patient.
1.Are you a patient or caregiver answering on behalf of a patient?
2.Have you been diagnosed with non-muscle invasive bladder cancer (NMIBC)?
3.If yes, was your NMIBC diagnosed with carcinoma in situ, sometimes called Stage 0?
4.Does your cancer have papillary tumours?
5.In what year were you diagnosed with non-muscle invasive bladder cancer?
6.Have you experienced any symptoms as a result of non-muscle invasive bladder cancer? (If you can, please try to focus on symptoms caused by the cancer rather than by any treatments.)
7.What treatment phase are you in?
8.What treatments have you received since your diagnosis?
9.Please describe your overall experience with these cancer treatments including both positive and negative experiences.
10.Have you experienced side effects as a result of treatment? (Do not include any side effects of Adstiladrin.)
11.How far did you have to travel to receive treatment for your NMIBC?
12.Did the travel distance required for treatment represent a hardship for you? If so, how?
13.On a scale of 1 (not important) to 5 (very important), how important are these outcomes for your cancer treatment?
1 - not important
2
3
4
5 - very important
Controlling disease progression
Reducing symptoms
Maintaining quality of life
Managing side effects
Preventing recurrence
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 drugs that can control disease progression or improve overall survival?
Questions 15-30 are for patients or caregivers with Adstiladrin (nadofaragene firadenovec-vncg) increased frequency or urgency to urinate treatment experience. If you have not been treated with Adstiladrin, you can proceed directly to Question 31.
15.Have you been treated as a bladder cancer patient with Adstiladrin (nadofaragene firadenovec-vncg)?
16.Were you eligible to receive Bacillus Calmette-Guérin (BCG) as treatment?
17.Did you receive any other drugs or therapies either before or after Adstiladrin? If yes, please identify them.
18.How long were you treated with Adstiladrin?
19.Are you still receiving Adstiladrin for treatment of bladder cancer?
20.If you are no longer receiving Adstiladrin, why?
21.If you discontinued treatment with Adstiladrin because you could not tolerate the side effects associated with it, which side effects compelled you to stop using it?
22.On a scale of 1 (much worse) to 5 (much better), how has your life changed on Adstiladrin compared to other therapies that you received?
1 - much worse
2
3
4
5 - much better
Metastatic cancer symptoms
Drug side effects
Maintaining quality of life
Controlling disease progression
Preventing recurrence
Travel time to treatment
23.Has Adstiladrin helped to manage your bladder cancer symptoms? If yes, please identify them below.
24.Have you experienced side effects while on Adstiladrin? If yes, please identify them below.
25.If you experienced side effects, which did you find most difficult to tolerate?
26.How much can you tolerate the side effects associated with Adstiladrin on a scale of 1 (completely tolerable) to 10 (completely intolerable)?
27.On a scale of 1 (no impact) to 5 (significant impact), how have the side effects associated with Adstiladrin impacted the following areas of your life:
1 - No impact
2
3
4
5 - Significant impact
Not applicable to me
Ability to work
Ability to sleep
Ability to perform household chores
Ability to care for children
Ability to spend time with family & friends
28.Did you have any difficulty accessing Adstiladrin?
29.Overall, what has been your experience with Adstiladrin? Describe the positive and negative.
30.Based on your personal experiences with Adstiladrin, would you recommend it to other patients with bladder cancer?
31.What country are you from?
32.If you are Canadian, what province are you from?
33.Would you be willing to participate in a telephone survey to discuss your experience with Adstiladrin?
34.If yes, please enter your email address or phone number below.
If you have a primary caregiver who is willing to participate in this survey, please allow them to complete the following questions by themselves.

If you don't have a primary caregiver or if they do not wish to participate in this survey, you can skip this section and click 'Done' at the bottom of the page to complete the survey.
35.What is your relationship to the bladder cancer patient?
36.In your own words, please describe how your day-to-day life has been impacted by caring for a person with bladder carcinoma (e.g. daily routines, ability to work, family obligations, financial impact, etc). Please include anything relevant to your experience as a caregiver.
37.How would you describe the effect of Adstiladrin on the patient for whom you are caring (if applicable)?
38.How did treatment with Adstiladrin affect your responsibilities as a caregiver?