PBC Foundation Patient Survey Question Title * 1. What age are you? Below 25 years of age 25 – 34 35 – 44 45 – 54 55 – 64 65+ Question Title * 2. What is your gender? Male Female Question Title * 3. Have you received a transplant? Yes No Question Title * 4. How long have you been living with the symptoms of PBC? ≤5 years 6 – 10 years 11 – 15 years 15 - 20 years 20-25 years > 25 years No symptoms Question Title * 5. When were you first diagnosed with PBC? ≤5 years 6 – 10 years 11 – 15 years 15 - 20 years 20-25 years > 25 years Question Title * 6. Who first diagnosed you with PBC? Your GP A local hospital doctor A specialist in a teaching hospital Question Title * 7. How does itch (pruritus) affect your quality of life? 0 5 Clear i We adjusted the number you entered based on the slider’s scale. Question Title * 8. How does fatigue affect your quality of life? 0 5 Clear i We adjusted the number you entered based on the slider’s scale. Question Title * 9. How does cognitive impairment (brain fog) affect your quality of life? 0 5 Clear i We adjusted the number you entered based on the slider’s scale. Question Title * 10. If you suffer from itch (pruritus), how is it treated? No active medical treatment Cholestyramine Rifampacin Other (please specify) Question Title * 11. How long have you been actively treated for your PBC? ≤5 years 6 – 10 years 11 – 15 years 15 - 20 years 20-25 years > 25 years Question Title * 12. Who is the main person treating your PBC on a routine basis? GP Gastroenterologist or hepatologist in a district general hospital Hepatologist in a specialist referral hospital / teaching hospital Nurse Other (please specify) Question Title * 13. How often do you see a GP, hospital doctor or nurse about your PBC ? Monthly Every 3 months Every 6 months Annually Not seen on a regular basis Question Title * 14. What is the reason for seeing your doctor or nurse about your PBC in the last 12 months? Regular check-up (every 3 or 6 months) Problems with taking your current treatment? Referral from general practitioner Concern about your treatment or worsening symptoms Other (please specify) Question Title * 15. What treatment(s) are you receiving for your PBC? Treatment for PBC Other medicines you are taking Question Title * 16. Has your UDCA dose ever been changed by your doctor? Yes No Question Title * 17. Why was the dose changed Dose has never been changed Reduced due to side effects (intolerant to UDCA) Reduced due to improved condition Increased due to worsening disease No response to UDCA Other Taken off treatment (explain why) Question Title * 18. How often does your doctor test your liver biochemistry? Every 3 months? Every 6 months? Annually Other (please specify) Question Title * 19. Does your GP always discuss the most recent Liver Tests (ALP, bilirubin levels) with you? Yes No Yes, if prompted No, but I would like to know Question Title * 20. Does your GP explain what changes in ALP and / or bilirubin levels mean for you? Yes No Yes, if prompted No, but I would like to understand more Question Title * 21. Does your hospital clinician always discuss the most recent Liver Tests (ALP, bilirubin levels) with you? Yes No Yes, if prompted No, but I would like to know Question Title * 22. Does your hospital clinician explain what changes in ALP and / or bilirubin levels mean for you? Yes No Yes, if prompted No, but I would like to understand more Question Title * 23. Have you ever received a liver biopsy Yes No Question Title * 24. How often have you had a liver biopsy Never Once Twice Other (please specify) Question Title * 25. Have you been assessed for osteoporosis (e.g “dexa” scan) Yes No Question Title * 26. Where do you live? Scotland Wales Ireland England - Greater London England - South East England - South West England - West Midlands England - North West England - North East England - Yorkshire and the Humber England - East Midlands England - East of England Other (please specify) Question Title * 27. Are you a member of the PBC Foundation? Yes No Question Title * 28. Are you a member of any other patient support organisations? BLT Liver4Life Health Unlocked Liver North Other (please specify) Question Title * 29. What do you look for in a patient support organisation? Question Title * 30. Which PBC Foundation services have you accessed? Bear Facts PBC Foundation website Health Unlocked Helpline Webinars Conference Self-management Development Workshops Volunteers’ network Question Title * 31. Accessing PBC Foundation services has enabled you to better manage your symptoms: Strongly agree Agree Disagree Strongly disagree Question Title * 32. “Accessing PBC Foundation services has enabled you to make more informed decisions about your PBC and its treatment”: Strongly agree Agree Disagree Strongly disagree Question Title * 33. “Accessing PBC Foundation services has helped you to feel less alone”: Strongly agree Agree Disagree Strongly disagree Question Title * 34. Intercept Pharma Ltd co-developed the questionnaire with the PBC Foundation. The survey was further designed with input from patients as part of a meeting run by the PBC Foundation. Intercept pays Portland Communications to provide non-financial support to The PBC Foundation on the analysis of the results and Intercept will have no access to patient responses. The costs to the PBC Foundation associated with the survey will be covered by a grant from Intercept. Done