Canadian Cancer Survivor Network Survey on Avelumab

The purpose of this survey is to provide the Canadian Cancer Survivor Network (CCSN) with insights and perspectives about the use of Avelumab for the treatment of patients with metastatic Merkel Cell Carcinoma.
This survey will be open until noon on Oct. 20, 2017, to enable us to prepare our patient evidence submission to the pan-Canadian Oncology Drug Review (pCODR) on Oct. 24, 2017.

Thank you for your participation!

Question Title

* 1. What are the symptoms or problems you experience with your Merkel cell carcinoma?

Fast-growing lump

Painless lump

Firm and dome-shaped or raised

Anxiety

Post-traumatic stress

Financial difficulties

Other (please specify)

Question Title

* 2. What therapies/treatments are you currently using to treat your Merkel cell carcinoma?

Cisplatin/etoposide

Carboplatin/etoposide

Surgery

External Radiation

Internal Radiation

Other (please specify)

Question Title

* 3. How effective have the therapies/treatments listed in question 2 been at controlling aspects of metastatic Merkel cell carcinoma?

	Very effective	Somewhat effective	Not very effective	Not effective at all	N/A
Cisplatin/etoposide	Cisplatin/etoposide Very effective	Cisplatin/etoposide Somewhat effective	Cisplatin/etoposide Not very effective	Cisplatin/etoposide Not effective at all	Cisplatin/etoposide N/A
Carboplatin/etoposide	Carboplatin/etoposide Very effective	Carboplatin/etoposide Somewhat effective	Carboplatin/etoposide Not very effective	Carboplatin/etoposide Not effective at all	Carboplatin/etoposide N/A
Surgery	Surgery Very effective	Surgery Somewhat effective	Surgery Not very effective	Surgery Not effective at all	Surgery N/A
External Radiation	External Radiation Very effective	External Radiation Somewhat effective	External Radiation Not very effective	External Radiation Not effective at all	External Radiation N/A
Internal Radiation	Internal Radiation Very effective	Internal Radiation Somewhat effective	Internal Radiation Not very effective	Internal Radiation Not effective at all	Internal Radiation N/A

Question Title

* 4. What treatment effects side effects have you have experienced?

Musculoskeletal

Nausea and vomiting

Fatigue

Infusion-related reaction

Rash

Peripheral edema

Diarrhea or loose bowels

Decreased appetite

Cough

Constipation

Athralgia

Abdominal pain

Other (please specify)

Question Title

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

Musculoskeletal Pain

Nausea and vomiting

Fatigue

Infusion-related reaction

Rash

Peripheral edema

Diarrhea or loose bowels

Decreased appetite

Constipation

Cough

Arthralgia

Abdominal pain

Other (please specify)

Question Title

* 6. 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)

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

Yes (please describe below)

Other (please specify)

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* 8. Which of the following issues would you hope that a new drug would address to manage Merkel cell carcinoma?

Better able to control symptoms

Reduce side effects from current medications / treatments

Ease of use

Stop disease progression

Other (please specify)

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* 9. Have you been treated with Avelumab?

Yes

No (if No, please do not answer the following questions)

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* 10. What issues are better managed on Avelumab than on your previous therapy?

Better able to control symptoms

Reduction in side effects from current medications or treatments

Ease of use

Stop disease progression

Other (please specify)

Question Title

* 11. If you are better able to control symptoms on Avelumab than on your previous therapy, please describe which symptoms.

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* 12. If more side effects are reduced on Avelumab than on your previous therapy, please describe which side effects.

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* 13. If you found that Avelumab was easier to use than your previous therapy, please describe how it was easier to use.

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* 14. What adverse effects were caused by Avelumab?

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* 15. What expectations do you have for your long-term health and well-being as a result of taking Avelumab?

Please complete the following two questions if you are a caregiver (family member or friend). If not, please skip to question 19.

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* 16. What challenges do you face in caring for your loved one who is living with Merkel cell carcinoma?

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* 17. What are the most challenging adverse effects related to current therapy or treatment that 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 survey, which will help the Canadian Cancer Survivor Network prepare our submission to the pan-Canadian Oncology Drug review (pCODR).