Introduction: Primary biliary cholangitis (PBC) is a chronic autoimmune liver disease causing bile duct destruction and inflammation, impacting patient's quality of life (QoL) due to variable symptoms. Digital symptom-tracker apps may improve patient care through enhanced monitoring. This study reassessed symptom burden in PBC patients using a tailored symptom-tracker app, focusing on its usability, effectiveness, and impact on management and QoL.
Methods: Based on Kautz5 gUG "Symptomtracker," our app in REDCap allowed users to log PBC symptoms over 4 weeks, alongside medication use. Ethics approval and data security complied with German regulations. User feedback was incorporated for better usability. Symptom data were standardized, and R software was used for descriptive statistics and Chi-square tests.
Results: From March 2023 to October 2024, 210 patients (190 female, 20 male) were enrolled, median age 51 years. Among 90 patients who completed the questionnaire, fatigue was most prevalent (87.8%), followed by joint pain (80%), concentration difficulties (74.4%), abdominal discomfort (70%), and sicca symptoms. Other common symptoms were leg cramps (50%) and swollen feet (40%); jaundice was rare (7.8%). Older patients, especially those aged 50-60, reported a higher symptom burden, but Chi-square tests showed no significant differences across age or gender.
Conclusion: This study highlights a significant symptom burden in PBC, particularly fatigue and joint pain. While older patients reported more symptoms, no significant differences were observed by age or gender. The symptom-tracker app enhanced monitoring and patient engagement, showing the potential of digital tools in PBC management. Further research is needed to evaluate long-term impacts.
Keywords: Autoimmune liver disease; Clinical decision support tools; Patient-centered research; Primary biliary cholangitis.
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