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, it can lead to persistent liver damage, meaning that the liver can only fulfil its important functions 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 symptom burden and thus have a positive influence on quality of life.

Based on an initial survey (2017-2019), a questionnaire was developed based on existing validated questionnaires. The PBC 10 and SF12 were used and pre-tests were conducted with cooperating centres. The questionnaire was put online in January 2021 for one year and advertised via the website of Deutsche Leberhilfe e.V. and pbcnews.info. Responses from 1032 patients were collected and scientifically analysed with the support of a statistician.

The first results have been submitted as an abstract for the ILC 2024. Further manuscripts are in progress.

Our co-operation partners in this project are: Andreas Kremer, Christian Trautwein, Carsten Schwenke and Deutsche Leberhilfe e.V.

We gratefully received support from Intercept Pharma GmbH and Advanz Pharma Specialty Medicine Deutschland GmbH.