Patient Feedback * 1. What were the main health problems or symptoms which made you attend your GP Painless lump Painful Lump Lump increasing in size Something else Other (please specify) * 2. How long was it from the time you noticed these symptoms before you attended your GP or A&E Less than a month Less than 3 Months More than 3 months * 3. After your first attendance at either your Doctor or A&E were you initially treated for your condition or treated for something else Treated for my condition Treated for something else * 4. Were you told by your GP or A&E that you were being treated for a soft tissue sarcoma Yes No Other (please specify) * 5. How long was it before either your GP or another doctor referred you to hospital for further investigation Within 2 weeks Within 1 month Longer How much longer Other (please specify) * 6. Were you initially referred to a specialist sarcoma or GIST clinic or some other department Specialist Sarcoma or GIST Clinic Other Department Which Department Other (please specify) * 7. When you were first diagnosed were you told that you had Primary GIST Primary and secondary/metastatic GIST don't know * 8. Following diagnosis for GIST were you given the name of a nurse to contact if you had worries or concerns Yes No * 9. Was your designated nurse a Clinical Nurse Specialist Yes No Don't know * 10. After your diagnosis were you given a treatment plan Yes No Don't know * 11. Did you have surgery as the first part of your treatment Yes No * 12. Did you have drug treatment before surgery to downsize the tumour and make it possible for surgery Yes No * 13. Following surgery did you receive adjuvant treatment (drugs to kill off any remaining tumour) Yes No * 14. How long have you been treated with any of the following drugs imatinib sunitinib regorafenib Years and months * 15. What have been the main side effects Please describe them Please describe them * 16. Did you have support from either your nurse or doctor in managing the side effects Yes No Some * 17. Please provide background information about yourself which will remain anonymous Male Female * 18. Age 10-25 25-45 45-65 over 65 * 19. Did you have a second opinion at another hospital after you were diagnosed Yes No * 20. How many different hospitals have you attended for your diagnosis and treatment 1 2 3 or more * 21. Do you believe you were treated in a specialist centre i.e. a hospital with a specialist department for treating GIST patients Yes No Don't know * 22. Please let us know the name of the hospital in which you are being treated Hospital name Name of Hospital * 23. Please describe how your diagnosis or treatment could have been better Describe Please describe * 24. How did you first hear of GIST Support UK From a Healthcare Professional via the internet Facebook Other (please specify) * 25. Have you received any literature or information which is published by GIST Support UK Yes No * 26. Please let us know of anything you think might be of use to GIST patients and carers which we can do Describe Comment Done
