Canadian Cancer Survivor Network Survey on Xtandi

The purpose of this survey is to provide the Canadian Cancer Survivor Network (CCSN) with insights and perspectives about living with and managing metastatic prostate cancer from patients and caregivers in order to complete a patient evidence submission for enzalutamide (Xtandi) for the treatment of patients with metastatic castration-resistant prostate cancer (mPRPC) who are asymptomatic or mildly symptomatic after failure of androgen deprivation therapy who have not received prior chemotherapy.

THIS SURVEY IS CLOSED.

Thank you for your participation!

Question Title

* 1. What are the symptoms or problems you experience with advanced prostate cancer that affect your day-to-day living and quality of life?

Fatigue

Anemia

Not sleeping at night - restless

Weight loss – lack of appetite

Constipation

Pain

Fractures or fear of fracture

Urinary incontinence/blood in the urine

Living with uncertainty

Feeling isolated or lonely

Anxiety, panic attacks

Depression

Other (please specify)

Question Title

* 2. Which of these symptoms are the most important to control. Please pick your top 5:

Fatigue

Sexual disfunction

Not sleeping at night - restless

Weight loss – lack of appetite

Constipation

Pain

Fractures or fear of fracture

Urinary incontinence/blood in the urine

Living with uncertainty

Feeling isolated or lonely

Anxiety, panic attacks

Depression

Other (please specify)

Question Title

* 3. What therapies/treatments are you currently using to treat your disease?

Bicalutamide (Casodex)

Cyproterone Acetate (Androcur)

Flutamide (Euflex)

Docetaxel (Taxotere)

Cabazitaxel (Jevtana)

Mitoxantrone

Prednisone

Abiraterone acetate (Zytiga)

Radiation therapy

Other hormone therapy

Clinical trial

Other (please specify)

Question Title

* 4. How effective have the therapies/treatments listed in question 3 been at controlling common aspects of advanced prostate cancer? Please check all that apply.

	Very effective	Somewhat effective	Not very effective	Not effective at all
Bicalutamide (Casodex)	Bicalutamide (Casodex) Very effective	Bicalutamide (Casodex) Somewhat effective	Bicalutamide (Casodex) Not very effective	Bicalutamide (Casodex) Not effective at all
Cyproterone Acetate (Androcur)	Cyproterone Acetate (Androcur) Very effective	Cyproterone Acetate (Androcur) Somewhat effective	Cyproterone Acetate (Androcur) Not very effective	Cyproterone Acetate (Androcur) Not effective at all
Flutamide (Euflex)	Flutamide (Euflex) Very effective	Flutamide (Euflex) Somewhat effective	Flutamide (Euflex) Not very effective	Flutamide (Euflex) Not effective at all
Docetaxel (Taxotere)	Docetaxel (Taxotere) Very effective	Docetaxel (Taxotere) Somewhat effective	Docetaxel (Taxotere) Not very effective	Docetaxel (Taxotere) Not effective at all
Cabazitaxel (Jevtana)	Cabazitaxel (Jevtana) Very effective	Cabazitaxel (Jevtana) Somewhat effective	Cabazitaxel (Jevtana) Not very effective	Cabazitaxel (Jevtana) Not effective at all
Mitoxantrone	Mitoxantrone Very effective	Mitoxantrone Somewhat effective	Mitoxantrone Not very effective	Mitoxantrone Not effective at all
Prednisone	Prednisone Very effective	Prednisone Somewhat effective	Prednisone Not very effective	Prednisone Not effective at all
Abiraterone acetate (Zytiga)	Abiraterone acetate (Zytiga) Very effective	Abiraterone acetate (Zytiga) Somewhat effective	Abiraterone acetate (Zytiga) Not very effective	Abiraterone acetate (Zytiga) Not effective at all
Radiation therapy	Radiation therapy Very effective	Radiation therapy Somewhat effective	Radiation therapy Not very effective	Radiation therapy Not effective at all
Other hormone therapy	Other hormone therapy Very effective	Other hormone therapy Somewhat effective	Other hormone therapy Not very effective	Other hormone therapy Not effective at all
Clinical trial	Clinical trial Very effective	Clinical trial Somewhat effective	Clinical trial Not very effective	Clinical trial Not effective at all

Other (please specify)

Question Title

* 5. What effects side effects have you have experienced?

Anemia

Diarrhea

Nausea and vomiting

Risk of infection

Other (please specify)

Question Title

* 6. Which side effects are the most difficult to manage?

Anemia

Diarrhea

Nausea and vomiting

Risk of infection

Other (please specify)

Question Title

* 7. Have you had problems accessing current treatment?

Yes

Limited availability in my community

Financial hardship due to cost

Travel costs associated with getting treatment

Supplies or issues with administration

Other (please specify)

Question Title

* 8. Are there any needs in your current therapy that are not yet being met?

Yes (please describe below)

Description

Expectations of a new drug: No experience with enzalutamide (Xtandi)

Please complete these questions if you have NOT been treated with enzalutamide (Xtandi).

Question Title

* 9. Based on the needs in question 8, how much of an improvement would be needed from the new drug to make it better than current treatment? Please describe.

Question Title

* 10. Which of the following issues would you hope that a new drug would address to manage your disease?

Better able to control symptoms

Reduce side effects from current medications / treatments

Ease of use

Stop disease progression

Question Title

* 11. What side effects would you be willing to tolerate?

Experiences with enzalutamide (Xtandi).

Please complete these questions only if you have been treated for metastatic castration-resistant prostate cancer (mCRPC) and are asymptomatic or mildly symptomatic after failure of androgen deprivation therapy and have not received prior chemotherapy.

Question Title

* 12. Please describe the positive and negative effects of enzalutamide (Xtandi).

Positive effects

Negative effects

Question Title

* 13. What issues are better managed on enzalutamide (Xtandi) than on your previous therapy?

	Yes	No
Better able to control symptoms	Better able to control symptoms Yes	Better able to control symptoms No
Reduction in side effects from current medications or treatments	Reduction in side effects from current medications or treatments Yes	Reduction in side effects from current medications or treatments No
Ease of use	Ease of use Yes	Ease of use No
Stop disease progression	Stop disease progression Yes	Stop disease progression No

Other (please specify)

Question Title

* 14. If you are better able to control symptoms on enzalutamide (Xtandi) than on your previous therapy, please describe which symptoms.

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* 15. If side effects are reduced on enzalutamide (Xtandi) than on your previous therapy, please describe which side effects.

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* 16. If you found that enzalutamide (Xtandi) was easier to use than your previous therapy, please describe how it was easier to use.

Question Title

* 17. What adverse effects were caused by enzalutamide (Xtandi)?

Fatigue

Diarrhea

Hot flashes

Other (please specify)

Question Title

* 18. Which adverse effects are acceptable and which ones are not?

	Acceptable	Not acceptable
Fatigue	Fatigue Acceptable	Fatigue Not acceptable
Diarrhea	Diarrhea Acceptable	Diarrhea Not acceptable
Hot flashes	Hot flashes Acceptable	Hot flashes Not acceptable
Other	Other Acceptable	Other Not acceptable

Question Title

* 19. What expectations do you have for your long-term health and well-being as a result of taking enzalutamide (Xtandi)?

Please complete the following if you are a caregiver (family member or friend).

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* 20. What challenges do you face in caring for your loved one with prostate cancer?

Question Title

* 21. Please describe how you feel about these challenges.

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* 22. How has caring for someone with metastatic prostate cancer affected your daily routine or lifestyle?

Question Title

* 23.
What are the most challenging adverse effects related to current therapy or treatment do you have to manage for your family member?

Please describe: (eg. Helping with fatigue, pain management, preparing meals, etc)

Thank you for your responses to these questions.

We appreciate your willingness to participate in this therapy, which will help the Canadian Cancer Survivor Network prepare our submission to the pan-Canadian Oncology Drug Review.

Question Title

* 24. How has caring for someone with advanced or metastatic prostate cancer affected your daily routine or lifestyle?

Question Title

* 25. Thank you for your responses to these questions.

We appreciate your willingness to participate in this survey, which will help the Canadian Cancer Survivor Network prepare our submission to the pan-Canadian Oncology Drug Review.

Question Title

* 1. What are the symptoms or problems you experience with advanced prostate cancer that affect your day-to-day living and quality of life?

Question Title

* 2. Which of these symptoms are the most important to control. Please pick your top 5:

Question Title

* 3. What therapies/treatments are you currently using to treat your disease?

Question Title

* 4. How effective have the therapies/treatments listed in question 3 been at controlling common aspects of advanced prostate cancer? Please check all that apply.

Question Title

* 5. What effects side effects have you have experienced?

Question Title

* 6. Which side effects are the most difficult to manage?

Question Title

* 7. Have you had problems accessing current treatment?

Question Title

* 8. Are there any needs in your current therapy that are not yet being met?

Question Title

* 9. Based on the needs in question 8, how much of an improvement would be needed from the new drug to make it better than current treatment? Please describe.

Question Title

* 10. Which of the following issues would you hope that a new drug would address to manage your disease?

Question Title

* 11. What side effects would you be willing to tolerate?

Question Title

* 12. Please describe the positive and negative effects of enzalutamide (Xtandi).

Question Title

* 13. What issues are better managed on enzalutamide (Xtandi) than on your previous therapy?

Question Title

* 14. If you are better able to control symptoms on enzalutamide (Xtandi) than on your previous therapy, please describe which symptoms.

Question Title

* 15. If side effects are reduced on enzalutamide (Xtandi) than on your previous therapy, please describe which side effects.

Question Title

* 16. If you found that enzalutamide (Xtandi) was easier to use than your previous therapy, please describe how it was easier to use.

Question Title

* 17. What adverse effects were caused by enzalutamide (Xtandi)?

Question Title

* 18. Which adverse effects are acceptable and which ones are not?

Question Title

* 19. What expectations do you have for your long-term health and well-being as a result of taking enzalutamide (Xtandi)?

Question Title

* 20. What challenges do you face in caring for your loved one with prostate cancer?

Question Title

* 21. Please describe how you feel about these challenges.

Question Title

* 22. How has caring for someone with metastatic prostate cancer affected your daily routine or lifestyle?

Question Title

* 23. What are the most challenging adverse effects related to current therapy or treatment do you have to manage for your family member?Please describe: (eg. Helping with fatigue, pain management, preparing meals, etc)

Question Title

* 24. How has caring for someone with advanced or metastatic prostate cancer affected your daily routine or lifestyle?

Question Title

* 25. Thank you for your responses to these questions. We appreciate your willingness to participate in this survey, which will help the Canadian Cancer Survivor Network prepare our submission to the pan-Canadian Oncology Drug Review.

* 23.
What are the most challenging adverse effects related to current therapy or treatment do you have to manage for your family member?

Please describe: (eg. Helping with fatigue, pain management, preparing meals, etc)

* 25. Thank you for your responses to these questions.

We appreciate your willingness to participate in this survey, which will help the Canadian Cancer Survivor Network prepare our submission to the pan-Canadian Oncology Drug Review.