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Primary biliary cholangitis (PBC) is an autoimmune liver disease. With PBC, the small bile ducts in the liver are damaged by an autoimmune reaction of the body. In the damaged small bile ducts, the bile can no longer drain properly. It builds up, enters the liver cells and causes inflammation of the cells. PBC is not curable, but it is easily treatable. PBC also causes symptoms that are sometimes very pronounced in those affected. They mainly include fatigue, itching, joint pain and Sicca syndrome.
With medication, in many cases the liver-damaging process can be stopped and the elevated liver values can be normalised. However, the symptoms also persist in many cases.
Overall, symptom management is still not accorded enough importance in medical therapy. Patients with severe symptomatology have diminished quality of life. However, in the course of the disease, affected individuals develop individual self-management strategies to alleviate symptoms, to cope with the disease and to improve and maintain their quality of life.
A survey of PBC patients will be used to demonstrate a possible relationship between symptomatology, self-management and quality of life in an evidence-based manner. The results of the survey are not only intended to be published scientifically, but will also make it possible to derive and establish concrete aids to manage the symptoms of affected patients.
The current survey builds on a 2017 survey (n=681). Based on the findings of the initial survey, the further research focus was formulated and the questionnaire was developed together with PBC experts working in the scientific field. We expect the first statistical evaluations in the fourth quarter of 2021.