Primary Biliary Cholangitis Quality of Life Scale (PBC-40)

Calculates PBC-40 total score and six subscales.

Answer according to how you felt during the last 4 weeks.

I. Symptoms

1. I was unable to eat what I liked

2. I ate or drank only a small amount and still felt bloated

3. I felt unwell when I drank alcohol

4. I had discomfort in my right side

5. I had dry eyes

6. My mouth was very dry

7. I had aches in my arms and legs

II. Itch

8. Itching disturbed my sleep

9. I scratched so much that I made my skin raw

10. I felt embarrassed because of itching

III. Fatigue

11. I had to force myself to get out of bed

12. I had to sleep during the day

13. Fatigue interfered with my daily routine

14. I felt worn out

15. I felt so tired that I had to force myself to do what I needed to do

16. I felt so tired that I had to go to bed early

17. Fatigue suddenly hit me

18. PBC drained every ounce of energy out of me

19. Some days it took me a long time to do anything

20. If I was busy one day, I needed at least another day to recover

21. I had to pace myself for day-to-day things

IV. Cognition

22. Because of PBC, I had to make a lot of effort to remember things

23. Because of PBC, I had difficulty remembering things from one day to the next

24. My concentration span was short because of PBC

25. Because of PBC, I had difficulty keeping up with conversations

26. Because of PBC, I found it difficult to concentrate on anything

27. Because of PBC, I found it difficult to remember what I wanted to do

V. Social

28. My sex life has been affected because of PBC

29. I feel I neglect my family because of having PBC

30. I feel guilty that I cannot do what I used to do because of having PBC

31. I sometimes feel frustrated that I cannot go out and enjoy myself

32. I tend to keep the fact that I have PBC to myself

33. I cannot plan holidays because of having PBC

34. My social life has almost stopped

35. Everything in my life is affected by PBC

36. PBC has reduced the quality of my life

37. I can still lead a normal life, despite having PBC

VI. Emotional

38. Because of PBC, I get more stressed about things than I used to

39. Having PBC gets me down

40. I worry about how my PBC will be in the future

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Important Notice

This resource is intended for educational purposes only and is intended for US healthcare professionals. Healthcare professionals should use independent medical judgment. All decisions regarding patient care must be handled by a healthcare professional and be made based on the unique needs of each patient.