2025. AASLD The Liver Meeting Abstract and Poster: 4476: IDENTIFYING GAPS IN PSC PATIENT EDUCATION AND UNDERSTANDING OF CHOLANGIOCARCINOMA SCREENING AND SURVEILLANCE PRACTICES: RESULTS OF A MULTINATIONAL PATIENT SURVEY

Authors: Brian T. Thorsen, Martine Walmsley, Susan O’Dell, Rachel Gomel, Mark Chatterley, Mary P. Vyas, Stephen J. Rossi

Abstract:

Background and Aims: People with primary sclerosing cholangitis (PSC) have up to a 20% lifetime risk of cholangiocarcinoma (CCA). CCA surveillance is challenged by the poor performance of current screening methods. We report results of a multinational patient survey to assess knowledge of CCA surveillance and patient-provider communication on CCA risk and surveillance results. The primary goal was to identify gaps in knowledge and communication in anticipation of new CCA screening tests.

Methods: A survey for adults with PSC was developed by PSC Partners and PSC Support patient organizations. Patients reported relevant medical history, CCA surveillance tests performed (MRCP, CA 19-9, ERCP), risk and results discussion, and CCA education. The data was analyzed to compare rates of proactive CCA discussion from providers by patient characteristics, region, and provider type.

Results: A total of 623 responses met screening criteria, primarily from the US (45%) and UK (31%). 31 patients reported a biliary tract cancer diagnosis (25 CCA, 6 GBC). Only 51% of patients reported proactive discussions by their provider of CCA risks and surveillance. Among patients who had a proactive CCA discussion, 56% reported having sufficient information regarding CCA, versus only 15% among those without proactive discussion (p < 0.001). Patients in North America reported a higher rate of proactive discussion than Europe (58.2% / 36.9%, p < 0.001), and rates were higher for hepatologists than gastroenterologists (55.0% / 38.3%, p < 0.001). Discussion rates were not significantly different across patient gender, age, and time since PSC diagnosis.

Annual MRCP surveillance was reported by 68% of patients, with significant differences by region and provider type. Proactive CCA discussion was strongly associated with more frequent use of annual MRCP. Regular CA 19-9 testing was reported by 36% of respondents. MRCP and CA 19-9 testing results for CCA surveillance were discussed with 27% and 72% of patients who had those tests, respectively.

Only 36% of patients felt they had adequate CCA information; the majority seeking information from online search, followed by patient organizations and their care team. Patients consistently reported significant anxiety and fear regarding CCA risk and the need for a reliable, non-invasive screening test.

Conclusion: The results show high variability in discussion of CCA risk and test results and CCA surveillance practice in a population burdened with anxiety and fear around CCA. These results are influenced by differences in regional guidelines, healthcare systems, and the lack of highly predictive non-invasive diagnostic and prognostic tools. Promising novel biomarkers to detect early CCA and risk will impact the current routine surveillance practices and patient education needs. Appropriate global patient/provider education and communication programs should be implemented to support the use and delivery of such tests.