Bladder Cancer (Urothelial Carcinoma) Patient Survey

Bladder Cancer Canada is looking for people with locally advanced or metastatic urothelial carcinoma and/or people who have been treated with Keytruda (pembrolizumab) 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 Keytruda (pembrolizumab) to treat locally advanced or metastatic urothelial carcinoma, in patients who have not previously received any treatment. 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 locally advanced or metastatic urothelial carcinoma.

It is also important to survey a subgroup of patients who have experience with Keytruda (pembrolizumab) as monotherapy, in adults who are not eligible for cisplatin-containing chemotherapy and whose tumours express PD‑L1 [Combined Positive Score (CPS) ≥10] as determined by a validated test, or in patients who are not eligible for any platinum‑containing chemotherapy regardless of PD‑L1 status.

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 Keytruda. 
Please contact Tammy Northam, Executive Director at info@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.

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* 1. Are you a patient or caregiver answering on behalf of a patient?

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* 2. Have you been diagnosed with locally advanced or metastatic urothelial carcinoma?

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* 3. Have you received or been offered chemotherapy with cisplatin?

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* 4. Have you received or been offered chemotherapy with carboplatin?

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* 6. Have you experienced any symptoms after a diagnosis of urothelial carcinoma? (If you can, please try to focus on symptoms caused by the cancer rather than by any treatments.)

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* 7. What treatment phase are you in?

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* 8. What intravenous treatments have you received since your diagnosis?

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* 9. Please describe your overall experience with these cancer treatments including both positive and negative experiences.

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* 10. What side effects have you experienced as a result of treatment?

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

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* 12. Have you had difficulties accessing cancer treatments for any of the following reasons?

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* 13. Have you had financial challenges as a result of your cancer treatment due to any of the following reasons?

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* 14. Have you needed financial assistance due to the costs of urothelial carcinoma or its treatment?

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* 15. 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
Questions 18-30 are for patients or caregivers with Keytruda (pembrolizumab) treatment experience. If you have not been treated with Keytruda, you can proceed directly to Question 31.

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* 18. Have you been treated as a bladder cancer patient with Keytruda (pembrolizumab)?

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* 19. Have you received other drugs or therapies either before or after Keytruda? If yes, please identify them.

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* 20. How long were you treated with Keytruda?

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* 21. Are you still receiving Keytruda for treatment of bladder cancer?

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* 22. If you are no longer receiving Keytruda, why?

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* 23. On a scale of 1 (much worse) to 5 (much better), how has your life changed on Keytruda compared to other therapies that you received?

  1 - much worse 2 3 4 5 - much better
Metastatic cancer symptoms (i.e. bone pain)
Drug side effects
Maintaining quality of life
Controlling disease progression

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* 24. Which cancer symptoms has Keytruda helped to manage?

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* 25. What side effects have you experienced while on Keytruda?

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* 27. On a scale of 1 (no impact) to 5 (significant impact), how have the side effects associated with Keytruda 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 drive
Ability to travel
Ability to exercise
Ability to perform household chores
Ability to care for children
Ability to fulfill family obligations
Ability to spend time with family & friends

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* 28. Did you have any difficulty accessing Keytruda?

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* 29. Overall, what has been your experience with Keytruda? Describe the positive and negative.

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* 30. Based on your personal experiences with Keytruda, would you recommend it to other patients with bladder cancer?

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* 31. What country are you from?

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* 33. Would you be willing to participate in a telephone survey to discuss your experience with Keytruda?

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* 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, click Done at the bottom of the page to complete the survey.

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* 35. What is your relationship to the bladder cancer patient?

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* 36. In your own words, please describe how your day-to-day life has been impacted by caring for a person with urothelial carcinoma (e.g. daily routines, ability to work, family obligations, financial impact, etc). Please include anything relevant to your experience as a caregiver.

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* 37. Have you or the patient needed financial assistance due to the costs of urothelial carcinoma or its treatment?

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* 38. What type of support is or would be most helpful for you in order to care for someone with urothelial carcinoma?

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