Implementation of an interactive App for Symptom Reporting in Patients with Primary Biliary Cholangitis: Initial results

Introduction: Primary Biliary Cholangitis (PBC) is a chronic autoimmune liver disease characterized by inflammation and destruction of the bile ducts. Symptom variability and progression complicate its management and the quality of life of patients. Leveraging digital health tools, such as symptom tracker apps, holds promise for enhancing patient care and treatment outcomes by enabling improved monitoring and personalized interventions.

Objective: This study aimed to develop and evaluate a symptom tracker app tailored for PBC patients, focusing on its usability, effectiveness in symptom monitoring, and potential impact on patient management and quality of life.

Methods: our mobile App was modeled after the paper-based “Symptomtracker” questionnaire from the patient representative group Kautz⁵ (previously "Leberhilfe Projekt"), and implemented using the REDCap and MyCap projects developed at Vanderbilt University. The app allowed users to record and track various symptoms associated with PBC from the last four weeks, including fatigue, pruritus, and abdominal discomfort, along with the use of medication and other measures for symptom management. Ethics approval was obtained and data security measures were implemented to ensure compliance with the German healthcare regulations. Iterative design cycles incorporated user feedback to optimize features and usability.

Results: Since its launch in March 2023, a total of 161 patients (144 female, 17 male) have enrolled. The median age was 54 years, with a mean age of 51.9 years (SD: 9.5), ranging from 24 to 77 years. Pruritus was reported by 64.8% of patients (n=83), concentration problems by 69.8% (n=88), abdominal discomfort by 67.5% (n=85), and a sensation of dryness in the eyes or mouth by 66.1% (n=84) and 46% (n=58), respectively. Notably, fatigue and articular pain unrelated to other causes were highly prevalent, being reported by 85.2% (n=109) and 83.3% (n=105) of the cohort.

Conclusion: The creation of a user-friendly symptom tracker app for PBC patients represents an advancement in patient-focused digital health solutions for chronic liver disease management. By empowering PBC patients to actively monitor and report their symptoms, the app will hopefully facilitate personalized care delivery, enhance clinical decision-making, and improve patient outcomes and quality of life in the management. Further studies are warranted to assess long-term efficacy and scalability in diverse patient populations.

Publication History

Article published online:
26 September 2024