Canadian Cancer Survivor Network Survey on trabectedin (Yondelis)

The purpose of this survey is to provide the Canadian Cancer Survivor Network (CCSN) with insights and perspectives about the use of trabectedin (Yondelis) for the treatment of patients with metastatic liposarcoma or leiomyosarcoma after failure of prior anthracycline and ifosfamide chemotherapy.

This survey will be open until noon on January 12, 2016, 5 pm, to enable us to prepare our patient evidence submission to the pan-Canadian Oncology Drug Review (pCODR) on January 13, 2016.

Thank you for your participation!

Question Title

* 1. What are the symptoms or problems you experience with metastatic liposarcoma or leiomyosarcoma ?

Pain or discomfort

Coughing

Shortness of breath

Fatigue

Insomnia

Loss of appetite

Constipation

Diarrhea

Depression

Anxiety

Post-traumatic stress

Financial difficulties

Other (please specify)

Question Title

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

Pain or discomfort

Coughing

Shortness of breath

Fatigue

Insomnia

Loss of appetite

Constipation

Diarrhea

Depression

Anxiety

Post-traumatic stress

Financial difficulties

Other (please specify)

Question Title

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

Doxorubicin

Ifosfamide

Doxorubicin and Ifosfamide

Doxorubicin and dacarbazine

Gemcitabine

Gemcitabine and docetaxel

Dacarbazine

Dacarbazine and gemcitabine

Pazopanib

Trabectedin

Other (please specify)

Question Title

* 4. How effective have the therapies/treatments listed in question 3 been at controlling common aspects of metastatic liposarcoma or leiomyosarcoma?

	Very effective	Somewhat effective	Not very effective	Not effective at all	N/A
Doxorubicin	Doxorubicin Very effective	Doxorubicin Somewhat effective	Doxorubicin Not very effective	Doxorubicin Not effective at all	Doxorubicin N/A
Ifosfamide	Ifosfamide Very effective	Ifosfamide Somewhat effective	Ifosfamide Not very effective	Ifosfamide Not effective at all	Ifosfamide N/A
Doxorubicin and Ifosfamide	Doxorubicin and Ifosfamide Very effective	Doxorubicin and Ifosfamide Somewhat effective	Doxorubicin and Ifosfamide Not very effective	Doxorubicin and Ifosfamide Not effective at all	Doxorubicin and Ifosfamide N/A
Doxorubicin and dacarbazine	Doxorubicin and dacarbazine Very effective	Doxorubicin and dacarbazine Somewhat effective	Doxorubicin and dacarbazine Not very effective	Doxorubicin and dacarbazine Not effective at all	Doxorubicin and dacarbazine N/A
Gemcitabine	Gemcitabine Very effective	Gemcitabine Somewhat effective	Gemcitabine Not very effective	Gemcitabine Not effective at all	Gemcitabine N/A
Gemcitabine and docetaxel	Gemcitabine and docetaxel Very effective	Gemcitabine and docetaxel Somewhat effective	Gemcitabine and docetaxel Not very effective	Gemcitabine and docetaxel Not effective at all	Gemcitabine and docetaxel N/A
Dacarbazine	Dacarbazine Very effective	Dacarbazine Somewhat effective	Dacarbazine Not very effective	Dacarbazine Not effective at all	Dacarbazine N/A
Dacarbazine and gemcitabine	Dacarbazine and gemcitabine Very effective	Dacarbazine and gemcitabine Somewhat effective	Dacarbazine and gemcitabine Not very effective	Dacarbazine and gemcitabine Not effective at all	Dacarbazine and gemcitabine N/A
Pazopanib	Pazopanib Very effective	Pazopanib Somewhat effective	Pazopanib Not very effective	Pazopanib Not effective at all	Pazopanib N/A
Trabectedin	Trabectedin Very effective	Trabectedin Somewhat effective	Trabectedin Not very effective	Trabectedin Not effective at all	Trabectedin N/A

Question Title

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

Hair loss

Nausea and vomiting

Fatigue

Infection

Anemia

Upset stomach

Diarrhea or loose bowels

Other (please specify)

Question Title

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

Hair loss

Nausea and vomiting

Fatigue

Infection

Anemia

Upset stomach

Diarrhea or loose bowels

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)

Other (please specify)

Question Title

* 9. Which of the following issues would you hope that a new drug would address to manage liposarcoma or leiomyosarcoma?

Better able to control symptoms

Reduce side effects from current medications / treatments

Ease of use

Stop disease progression

Other (please specify)

Question Title

* 10. Have you been treated with trabectedin (Yondelis)?

Yes

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

Question Title

* 11. What issues are better managed on trabectedin (Yondelis) 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

* 12. If you are better able to control symptoms on trabectedin (Yondelis) than on your previous therapy, please describe which symptoms.

Question Title

* 13. If more side effects are reduced on trabectedin (Yondelis) than on your previous therapy, please describe which side effects.

Question Title

* 14. If you found that trabectedin (Yondelis) was easier to use than your previous therapy, please describe how it was easier to use.

Question Title

* 15. What adverse effects were caused by trabectedin (Yondelis)?

Question Title

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

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

Question Title

* 17. What challenges do you face in caring for your loved one who is living with liposarcoma or leiomyosarcoma?

Question Title

* 18. 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).