From Isolation to Information: Launching an Online Community for Patients with Primary Sclerosing Cholangitis, Primary Biliary Cholangitis, and Autoimmune Hepatitis in Romania-A Descriptive Study.

Background

Primary Sclerosing Cholangitis (PSC), Primary Biliary Cholangitis (PBC), and Autoimmune Hepatitis (AIH) are rare immune-mediated liver conditions that significantly affect patients' quality of life. In Romania, access to specialized information and patient support resources is limited, underscoring the need for tailored educational tools. The aim was to describe the methodology for developing, implementing, and conducting a feasibility study of an online platform for patients with PSC, PBC, and AIH, as a pilot study, providing early insights.

Methods

The platform offers educational materials, registration, a discussion forum, and digital tools for quality-of-life assessment. Data on demographics, usage, and quality of life were collected using standardized questionnaires (CLDQ-PSC, PBC-10) and non-standardized questionnaires, and analyzed with Microsoft Office Excel and DATATab.

Results

The website was created using an online platform requiring no advanced IT skills. Content was developed in accordance with international guidelines (EASL, AASLD) and translated and adapted for Romanian patients. As of 15 July 2025, 81 patients had been registered (26% PSC, 68% PBC, 6% AIH), with a predominance of urban participants (all patients: 87% female, mean age at diagnosis = 44.5 years). Most participants used mobile devices and reported improved understanding and engagement with their health after using the platform.

Conclusions

The first dedicated digital platform has been established in Romania to address the health literacy needs of patients with PSC, PBC, and AIH. The study offers insights into future directions and a replicable model for similar initiatives. The pilot evaluation of the platform faced several limitations, including self-selection bias, non-standardized assessments, and a small sample size.