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Hello:
You are invited to participate in our survey. This survey is intended to find out the educational needs and preferences of materials for metastatic breast cancer patients and their care partners. We are going to ask your opinion about different types of items that could be included in a patient starter kit. This would be given out in the doctor's office to someone about to begin a new treatment for HER2+ metastatic breast cancer which we will call Product X. Product X is a targeted therapy that would be given with another targeted therapy and a chemotherapy drug.
It will take approximately 20-30 minutes to complete the questionnaire.
Your participation in this study is completely voluntary. If you feel uncomfortable answering any questions, feel free to skip and go to the next question. It is very important for us to learn your opinions.
Your survey responses will be strictly confidential and responses will be shared anonymously. We will have a follow up phone interview with you in the next few days to discuss some of your responses in more detail.
If you have questions at any time about the survey or the interview, you may contact Jackie Cleary at (908)389-2108 or by email at [email protected]
Thank you very much for your time and support. Please start with the survey now by clicking on the Continue button below.
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| 2. What types of information do you want to learn when you or someone you care for is starting a new infusion cancer treatment? (Select all that apply)? |
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| 3. QUESTIONS FOR NURSES ONLY: What types of information do you think is important for patients to learn when starting a new infusion cancer treatment (Select all that apply)? |
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| 4. Pick the top three types of information most important to you. Rank them in order of importance from 1-3, with 1 being most important. |
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| About treatment, such as how it works and how it's given |
| | | Side effects from treatment |
| | | Preparing for treatment |
| | | Communicating with others about treatment |
| | | Learning from other HER2+ metastatic breast cancer patients |
| | | How to relieve stress |
| | | Financial assistance programs |
| | | Transportation to and from treatment |
| | | Planning for changes in daily routine due to treatment |
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| 5. How do you most prefer to learn information when you or someone you care for is starting a new breast cancer treatment? |
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| 6. QUESTION FOR NURSES ONLY: How do your patients most prefer to learn information about their breast cancer treatment? |
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| 7. Your doctor or nurse may give you a kit containing information about your new treatment. Please check which style you would most like to receive. |
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| 8. Please tell us why you preferred this type of kit: | | |
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| The next few questions are for nurses only. If you are not a nurse, please continue on to the next question. |
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9. QUESTION FOR NURSES ONLY: Please looks at the following types of kits that could be given out to your patients:
Bag with zipper and carrying strap 
3-ring binder 
Box with fold over flap and inside tabs 
Folder with pockets 
Tri-folder with wells to hold items  |
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| 10. QUESTION FOR NURSES ONLY: How likely are you to distribute this type of kit to your patients:
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| 11. QUESTION FOR NURSES ONLY: What features of the kit would make you more likely to distribute it to your patients: | | |
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| 12. QUESTION FOR NURSES ONLY: This type of kit would be difficult to store in our clinic/office:
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| 13. List where you store patient materials like a starter kit: | | |
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Patient Starter Brochure
This 20-page brochure is a guide to Product X treatment. It includes information about a new HER2+ metastatic breast cancer targeted treatment option. Also includes information about how this therapy works, setting expectations about possible side effects, and how Product X is given in combination with another targeted treatment and a chemotherapy drug.
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| 14. I would find a brochure like this about my new treatment helpful. |
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| 15. I would share this brochure with others (family and friends). |
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| 16. QUESTION FOR NURSES ONLY: My patients would find a brochure like this about their new treatment helpful. |
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| 17. QUESTION FOR NURSES ONLY: I would share this brochure with my patients. |
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Guide to treatment for Product X
This is a 28-32 page, spiral bound guide that helps patients prepare for Product X treatment. Content will be divided by tabs and include information about how to prepare for treatment, what to expect during treatment, and what to look out for after treatment.
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| 18. A treatment guide would be helpful if it described the following:
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| 19. What would make you more likely to use this guide: | | |
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| 20. A guide like this would be helpful to set expectations about treatment. |
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| 21. QUESTION FOR NURSES ONLY: How would you use this guide with patients? (Select all that apply)? |
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Fatigue Tracker
Provides patients with an easy way to assess and track their daily fatigue levels during the 1st treatment cycle with Product X. Can also help support patients in their discussions with their doctor and nurse.
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| 22. Fatigue from treatment is an important concern for me. |
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| 23. A fatigue tracker would help me talk with my doctor or nurse about my level of fatigue. |
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| 24. How often would you use fatigue tracker? |
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| These next 5 questions are for nurses to complete. Please skip and continue if you are not a nurse. |
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| 25. Patients with metastatic breast cancer often experience fatigue? |
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| 26. Patients are effective at communicating their level of fatigue with me. |
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| 27. A tool to help patients track daily fatigue level would be helpful to them. |
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| 28. A tool to help patients track their daily fatigue level would help patients communicate more effectively with me about their fatigue. |
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| 29. Would it be helpful for patients to have a tracker for any other side effect issues? If so, please list. | | |
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| Information about Combination Treatment |
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| 30. I want to learn about how a treatment works in the body to help control and treat the cancer. |
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| 31. Which of the following would best help you learn about how a treatment works in the body to help control or treat the cancer. |
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This is a booklet with an attached USB port that can be plugged into your computer. It can explain how the treatment works in the body to help fight the cancer. It also can explain how Product X works with another targeted therapy and a chemotherapy drug.
How likely would you use a tool like this booklet below to learn about how a treatment works? For nurses, how likely would you share this type of booklet with your patients? |
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32. QUESTIONS FOR NURSES ONLY: My patients want to learn about how a treatment works in their body to help fight the cancer or stop the cancer from growing.
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Patient Journal
Daily or weekly journal allows patients to record their feelings and experience with metastatic breast cancer and a new treatment.
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| 33. I find it helpful to write down my feelings about my cancer experience (or about experience of caring for a person with cancer). |
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| 34. I would use a journal to write down my feelings about my cancer experience (or the experience of caring for someone with cancer). |
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| 35. I would want my journal to have the following: (Select all that apply) |
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| 36. I would use this journal: |
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| 37. QUESTION FOR NURSES ONLY: My patients find it helpful to write down their feelings about their cancer experience. |
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| 38. I want to hear the stories of other HER2+ metastatic breast cancer patients. |
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| 39. Which of the following ways would you or your patients prefer to hear stories from other metastatic breast cancer patients. |
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| 40. It is helpful for patients to hear inspirational stories from other metastatic breast cancer patients. |
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| 41. What do you currently do or have you done in the past during your infusion treatments (Select all that apply)? Nurses, what do you observe patients doing the most during treatment? |
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| 42. I feel that it's important to have my care partner also get information about my treatment. |
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| 43. As a care partner, I feel it's important to get as much information as I can about the treatment. |
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| 44. As a care partner, I need resources for support. |
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45. This is an 8-12 page guide that helps support care partners in their role and provides resources for support.
A tool like this would benefit me as a care partner. |
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| 46. A tool like this would benefit my care partner. |
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| 47. Please rank (1-8) the following in order of being useful to you during treatment: |
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| Blanket |
| | | Back massager |
| | | Earplugs |
| | | Eye mask |
| | | Pillow |
| | | Seat cushion |
| | | Stress ball |
| | | Water bottle |
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| 48. Why would this be most helpful to you during treatment? | | |
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| 49. Please rank (1-8) the following in order of being useful to you at home: |
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| Blanket |
| | | Back massager |
| | | Earplugs |
| | | Eye mask |
| | | Pillow |
| | | Seat cusion |
| | | Stress ball |
| | | Water bottle |
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| 50. Why would this be most helpful to you at home? | | |
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