Collecting clinical data during an emergency: quality of life in primary biliary cholangitis during the COVID-19 pandemic

Background. Primary biliary cholangitis (PBC) is a chronic autoimmune liver disease. As an infrequent disease, a Facebook group was created for patients to share experiences and problems. In fact, during the COVID-19 pandemic, patient analysis could only be done through remote connection systems. Therefore, to analyze patients' quality of life (QoL), we exploited social networks and online data collection platforms. Objectives. A survey was carried out to evaluate the QoL of patients with PBC during the COVID-19 pandemic. Materials and Methods. A Facebook group was used for patient enrolment. Age, sex, diagnosis, years since diagnosis, associated diseases, histological stage of the disease, value of elastography, and current therapy were collected. PBC 40 online questionnaire was submitted to patients to assess their QoL. Results. 78 patients participated in the study: 75 females, and 3 males, the mean (±SD) age was 46.4±11.5. The main diagnoses were PBC in 66 patients and overlapping syndrome PBC + autoimmune hepatitis in 10. Histology was available in 45 patients, of whom 34 were stages 1-2 and 11 stages 3-4. The main therapy was ursodeoxycholic acid in 56 pts. The questionnaire is divided into 6 domains, covering fatigue, emotional, social, and cognitive functions, general symptoms, and itching. The mean and standard deviation of the scores were computed. Interpretation of the results obtained by applying a quantitative scale showed no impairment for social, mild impairment for general symptoms, itching, cognitive and emotional function, and moderate impairment for fatigue. No correlation was found between scores and disease duration. Conclusions. This study demonstrates that online questionnaires are a viable substitute for paper questionnaires and that data collected from online surveys on Facebook can have scientific relevance; PBC had the greatest impact on QoL on fatigue and the least on social aspects.