Kidney Cancer Scotland need your views about living with kidney cancer and medicines

When a new medicine is being looked at for use by the NHS in Scotland, patient groups like Kidney Cancer Scotland are asked to complete a patient group submission form with questions about how patients and carers are affected by their condition.

It would be great if you would answer some or all of the questions below so we can add your views. It makes it all more realistic to the people making decisions about the medicine. The views you give may be used as a quote, but your name will not be mentioned.

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* 1. What is your age?

18 to 24

25 to 34

35 to 44

45 to 54

55 to 64

65 to 74

75 or older

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* 2. What is your gender?

Female

Male

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* 3. Which aspects of kidney cancer are most challenging on a day to day basis (for example symptoms, loss of ability to work, loss of confidence to go out, inability to drive, social exclusion)?

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* 4. What activities do you find difficult to do or are unable to do?

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* 5. What is the most important aspect to control (for example symptoms that limit social interaction or ability to work, such as difficulty breathing, pain, fatigue, incontinence)

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* 6. What if any support do you require for daily living (physical or emotional)?

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* 7. Has there been a financial impact, such as loss of earnings or cost of travelling to appointments?. If so, what kind of financial impact?

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* 8. Do you experience any psychological distress due to kidney cancer? If so, how does this affect you?

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* 9. What are your experiences of treatments for kidney cancer?

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* 10. Did they or do the treatments affect your quality of life in any way? If so, in what way?

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* 11. Are you worried about the long term effects of treatment? If so, in what way?

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* 12. Are there any difficulties taking the medicine or side effects? If so, what are the difficulties?

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* 13. If there are side effects, are you willing to tolerate them because of the benefit of the treatment? Why?

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* 14. Does taking the medicine mean you need less support from your family and friends? If so, in what way?

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* 15. Have you had any experiences of taking the medicine Pembrolizumab , Avelumab or Axitinib ?

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* 16. If so, which medicine and please describe how the treatment went for you.

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* 17. If you had side effects what were they?

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* 18. If you had side effects, were they worth it for the outcome of the treatment? Let us know more about that

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* 19. How would having access to these medicine help you and others?

Thank you for your help. If you have any questions , please get in touch by email contact@kidneycancerscot.org