The Acute Cholangitis Patient Experience Survey is a collaborative effort between PSC Partners, PSC Support (UK), and the Forum for Collaborative Research/PSC Forum.
This multi-national survey was developed to capture the experiences of patients during acute cholangitis attacks, including their symptoms, treatments, and access to care.
Over 700 participants have shared their experiences, revealing a wide range in the frequency and severity of acute cholangitis symptoms.
Notably, fatigue and anxiety emerged as under-recognized concerns, highlighting the need for further investigation.
Even when treated, 32% of patients did not return to their perceived baseline health status after episode resolution.
This survey serves as a foundation for the next phase: developing a patient-reported outcome (PRO) measure to complement existing clinical definitions and support future clinical research.
Posted July 2025
