The six domains and 40 questions of the PBC-40†
| Domain | Question | Response options* |
|---|---|---|
| *Items are scored from 1 to 5 and the individual item scores are summed to give a total domain score. Maximum and minimum domain scores are shown in table 5. The direction of scoring of some items is reversed for calculation of domain scores so that in all cases, high scores represent high impact and low scores low impact of PBC on quality of life. | ||
| †Copies of the questionnaire and full scoring instructions are obtainable from the authors. | ||
| Symptoms | In the last 4 weeks: | Never, rarely, sometimes, most of the time, always |
| I was able to eat what I liked | ||
| I ate or drank only a small amount, and still felt bloated | ||
| I felt unwell when I drank alcohol | ||
| I had discomfort in my right side | ||
| I had dry eyes | ||
| My mouth was very dry | ||
| I had aches in the long bones of my arms and legs | ||
| Itch | In the last 4 weeks: | Never, rarely, sometimes, most of the time, always |
| Itching disturbed my sleep | ||
| I scratched so much I made my skin raw | ||
| I felt embarrassed because of the itching | ||
| Fatigue | In the last 4 weeks: | Never, rarely, sometimes, most of the time, always |
| I had to force myself to get out of bed | ||
| I had to have a sleep during the day | ||
| Fatigue interfered with my daily routine | ||
| I felt worn out | ||
| I felt so tired, I had to force myself to do the things I needed to do | ||
| I felt so tired, I had to go to bed earlier than usual | ||
| Fatigue just suddenly hit me | ||
| PBC drained every ounce of energy out of me | ||
| Some days it took me a long time to do anything | ||
| If I was busy one day I needed at least another day to recover | ||
| I had to pace myself for day-to-day things | ||
| Cognition | In the last 4 weeks: | Never, rarely, sometimes, most of the time, always |
| I had to make a lot of effort to remember things | ||
| I had difficulty remembering things from one day to the next | ||
| My concentration span was short because of PBC | ||
| I had difficulty keeping up with conversations | ||
| I found it difficult to concentrate on anything | ||
| I found it difficult to remember what I wanted to do | ||
| Social | My sex life has been affected by having PBC | Not at all, a little, somewhat, quite a bit, very much |
| I feel I neglect my family because of having PBC | ||
| I feel guilty that I can’t do what I used to do because of having PBC | ||
| I sometimes feel frustrated that I can’t go out and enjoy myself | ||
| I tend to keep the fact that I have PBC to myself | ||
| I can’t plan holidays because of having PBC | ||
| My social life has almost stopped | ||
| Everything in my life is affected by PBC | ||
| PBC has reduced the quality of my life | ||
| I can still lead a normal life, despite having PBC | ||
| Emotional | Because of PBC, I get more stressed about things than I used to | Not at all, a little, somewhat, quite a bit, very much |
| Having PBC gets me down | ||
| I worry about how my PBC will be in the future | ||