PBC-40 – Quality of Life for PBC Measure

Over the last four weeks…

I was unable to eat what I liked (Symptoms) :
I ate or drank only a small amount, and still felt bloated (Symptoms):
I felt unwell when I drank alcohol (Symptoms):
I had discomfort in my right side (Symptoms) :
I had dry eyes (Symptoms) :
My mouth was very dry (Symptoms) :
I had aches in the long bones of my arms and legs (Symptoms) :
Itching disturbed my sleep (Itch) :
I scratched so much I made my skin raw (Itch) :
I felt embarrassed because of the itching (Itch) :
I had to force myself to get out of bed (Fatigue) :
I had to have a sleep during the day (Fatigue) :
Fatigue interfered with my daily routine (Fatigue) :
I felt worn out (Fatigue) :
I felt so tired, I had to force myself to do the things I needed to do (Fatigue) :
I felt so tired, I had to go to bed earlier than usual (Fatigue) :
Fatigue just suddenly hit me (Fatigue) :
PBC drained every ounce of energy out of me (Fatigue) :
Some days it took me a long time to do anything (Fatigue) :
If I was busy one day I needed at least another day to recover (Fatigue) :
I had to pace myself for day-to-day things (Fatigue) :
I had to make a lot of effort to remember things (Cognition) :
I had difficulty remembering things from one day to the next (Cognition) :
My concentration span was short because of PBC (Cognition) :
I had difficulty keeping up with conversations (Cognition) :
I found it difficult to concentrate on anything (Cognition) :
I found it difficult to remember what I wanted to do (Cognition) :
My sex life has been affected by having PBC (Social) :
I feel I neglect my family because of having PBC (Social) :
I feel guilty that I can’t do what I used to do because of having PBC (Social) :
I sometimes feel frustrated that I can’t go out and enjoy myself (Social) :
I tend to keep the fact that I have PBC to myself (Social) :
I can’t plan holidays because of having PBC (Social) :
My social life has almost stopped (Social) :
Everything in my life is affected by PBC (Social) :
PBC has reduced the quality of my life (Social) :
I can still lead a normal life, despite having PBC (Social) :
Because of PBC, I get more stressed about things than I used to (Emotional) :
Having PBC gets me down (Emotional) :
I worry about how my PBC will be in the future (Emotional) :

The PBC-40 is a disease specific health related quality of life measure for primary biliary cirrhosis.

Formula :

40 questions, each scored on a scale of 1 to 5 (where 1 = least impact, 5 = greatest impact) grouped into six domains (symptoms, itch, fatigue, cognition, social, and emotional). For each domain, scoring involved summing individual question response scores.

Explanation of Result :

Higher scores indicate a poorer quality of life.

* Please verify all calculations prior to clinical use.

References

  • Jacoby A1, Rannard A, Buck D, Bhala N, Newton JL, James OF, Jones DE. Development, validation, and evaluation of the PBC-40, a disease specific health related quality of life measure for primary biliary cirrhosis. Gut. 2005 Nov;54(11):1622-9. PMID: 15961522.