The Cholangiocarcinoma Patient Survey is a joint effort by PSC Partners and PSC Support (UK) to assess PSC patient awareness and communication gaps around cholangiocarcinoma (CCA), a rare bile duct cancer associated with PSC.
Patients with PSC face an increased risk of developing CCA, making early detection and improved understanding crucial—especially as new screening tests are developed.
A total of 624 adult PSC patients participated in the survey, offering wide-ranging insight into current knowledge and unmet informational needs.
Results reveal significant gaps in both patient and provider education regarding CCA risk and surveillance, alongside a strong demand for accurate and timely detection methods.
Proactive discussion of CCA risk with healthcare providers was strongly associated with patients reporting adequate knowledge of CCA, with differing rates of proactive discussion by region and specialty of the clinician managing PSC.
Findings point to the need for tailored communication and educational strategies to be implemented ahead of any future CCA screening rollout within the PSC community.
Results from this survey were presented at the Precision BTC Network meeting in Mallorca in May, and the abstract has been accepted for poster presentation at the AASLD conference in Washington D.C in November.
Posted July 2025
