Self-management strategies for symptom burden in primary biliary cholangitis are associated with improved health-related quality of life.

Authors

Renate Wisse, Kristina Sokolovic, Johannes Wiegand, Eva Katharina Messer, Andreas Kremer, Carsten Schwenke, Achim Kautz, Diane Langenbacher

Published in

Digestive diseases (Basel, Switzerland). Pages 1. Oct 20, 2026. Epub Oct 20, 2026.

Abstract

Introduction PBC patients can experience severe morbidity and extrahepatic symptoms leading to impaired HRQoL; it is proposed that this is due to symptom burdens rather than disease morbidity. There are few medical interventions for PBC symptoms. Many patients rely on self-management strategies to improve symptom burden. However, there is limited research exploring the prevalence and impact of PBC symptom burden on HRQoL. Study aims: 1. analyse the influence of extrahepatic symptoms on HRQoL; 2. measure the effect of self-management strategies on symptom burden and HRQoL. Methods PBC patients in Germany completed a survey on self-management and impact on HRQoL for the symptoms fatigue, pruritus, arthralgia, and sicca syndrome. In addition, the 12-Item short-form health survey and the 10-item PBC quality of life survey were used. Data were collected from January 2021 to January 2022. All data were patient self-reported; no clinical validation data was collected. Descriptive data analysis aimed to identify significant differences in influence on HRQoL, and clusters of self-management strategies. Results Of the 1032 surveys, all four symptom burdens were found to have a statistically significant influence on HRQoL. Data didn't allow evaluation of symptom burden and its link to biochemical disease activity, disease stage and UDCA dosages. Three clusters of reported symptom improvement were identified. A large variety of strategies were reported to improve a respective symptom. Conclusion The study showed significant positive associations between use of self-management strategies and improved HRQoL. Clinicians should support patients in finding the best self-management strategy for their personal disease experience.

PMID:
42900649
Bibliographic data and abstract were imported from PubMed on 21 Oct 2026.

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