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Primary Biliary Cholangitis (PBC) is a chronic autoimmune disease of the liver. In PBC, the small bile ducts in the liver are damaged by an autoimmune process. If PBC is not treated, permanent liver damage can occur, so that the liver can only perform its important tasks for the entire organism to a limited extent or not at all.
There is little data on the quality of life of PBC patients. There is also a lack of data on which self-management strategies reduce the burden of symptoms and thus have a positive impact on quality of life.
A questionnaire was developed based on existing validated questionnaires.
In a first survey (2017-2019) 580 answers could be collected.
In a second survey, an adapted questionnaire was used (use of the PBC 10 and SF12; coordination and pre-test with cooperating centers; Deutsche Leberhilfe e.V. and statisticians). Almost 1000 responses have been collected so far.
Our cooperation partners in this project are: Andreas Kremer, Christian Trautwein, Carsten Schwenke and the Deutsche Leberhilfe e.V.
We gratefully received support from Intercept Pharma.
Other orders and projects that resulted from this were the abstract itching, a QoL presentation at the DGEM 2019 congress and an abstract at the DGVS conference 2019. Further publications are also in preparation.