Pancreatic Cancer UK wants to know more about people’s experiences of NanoKnife (Irreversible Electroporation or IRE) to treat pancreatic cancer.

This survey asks about your family member's experiences of the IRE procedure and its impact on them. The findings will be used as evidence in a report to the National Institute for Health and Care Excellence (NICE), which is carrying out a consultation on IRE. IRE is currently only available on the NHS as part of research studies, and at one private hospital in London. NICE is looking at whether IRE should be available on the NHS, and your views will help inform the consultation. You can read more about IRE on our website: http://www.pancreaticcancer.org.uk/information-and-support/treatments-for-pancreatic-cancer/irreversible-electroporation-nanoknife/

Your answers to this survey are completely confidential and will remain anonymous in any future report or communication about this survey. 

If you need any help completing the survey, please call Leah Miller, Policy and Campaigns Officer at Pancreatic Cancer UK on 0203 727 5545 or email leah.miller@pancreaticcancer.org.uk

We would really appreciate it if you could complete the survey by 10th November 2016. 

Thank you.

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* 1. Are you a family member of someone who:

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* 2. What is/was your family member's gender?

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* 3. How old were they when they had IRE?

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* 4. What is/was their ethnicity?

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* 5. What is/was their postcode?

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* 6. When were they diagnosed with pancreatic cancer?

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* 7. What type of pancreatic cancer were they diagnosed with?

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* 8. What stage was their cancer when they were diagnosed?

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* 9. What treatments have they had so far/did they have?

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* 10. Where do/did they have their treatment?

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* 11. Please answer the following questions if your family member has had IRE. If they are waiting to have IRE please go to Question 20

Where did they have IRE?

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* 12. When did they have IRE?

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* 13. Was it part of a research study?

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* 14. Did they have IRE privately?

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* 15. At what stage was their pancreatic cancer when they had IRE?

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* 16. Did they have open IRE (where the doctors make a big cut in the tummy area to insert the needles) or percutaneous IRE (where the needles are inserted through the skin)?

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* 17. Were they receiving any other treatments at the same time as IRE?

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* 18. As far as you know, how well has IRE worked/did IRE work for your family member?

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* 19. If your family member has passed away, how long did they live for after having IRE?

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* 20. Please answer the following questions if you family member is waiting to have IRE. If they have had IRE please go to Question 24

Where are they planning to have IRE?

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* 21. When are they planning to have it?

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* 22. Will it be part of a research study?

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* 23. Will they be having IRE privately?

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* 24. Are they willing to have potential side effects of IRE if there is a chance of it helping them to live longer?

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* 25. All respondents: How did your family member find out about IRE?

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* 26. Do they feel they had/have enough information about IRE?

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* 27. Do you feel that you have/had enough information about IRE?

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* 28. What were/are their reasons for having IRE?

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* 29. Please answer the following questions if your family member has had IRE. If they are waiting to have IRE please go to Question 38

Compared to before they had IRE, how would your family member rate/have rated their quality of life following IRE?

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* 30. What physical impact has IRE had on them/did IRE have on them? e.g. mobility, pain/discomfort, lack of energy, etc.

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* 31. What impact has IRE had/did IRE have on their ability to take part in normal daily activities?

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* 32. What side effects did they have as a result of IRE?

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* 33. What have been/were the advantages of having IRE?

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* 34. What have been/were the disadvantages of having IRE?

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* 35. Based on their experience would your family member recommend/have recommended IRE to other people with pancreatic cancer?

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* 36. Based on your experience would you recommend IRE to people with pancreatic cancer?

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* 37. Does your family member/did your family member think IRE should be made available on the NHS to everyone who is suitable?

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* 38. All respondents: Please feel free to write any other comments you have about IRE

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* 39. Pancreatic Cancer UK would like to thank you for your time in giving us your valuable feedback on IRE. If you would like to receive a summary of the findings please write your name and address/email address in the box below:

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* 40. Pancreatic Cancer UK might like to discuss your responses further. If you are happy for us to do this, please write your name and address/email address in the box below:

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* 41. Pancreatic Cancer UK will be looking for people who are willing to be case studies for this consultation. This would involve being contacted separately by Pancreatic Cancer UK and asked further questions about your experiences. Case studies may be approached for further comment in other documents or for media purposes. If this is something you would be interested in, please write your name and address/email address in the box below:

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