Understanding the Burden of Itch in Primary Biliary Cholangitis: Reliable Patient Reported Outcomes Tools are the Key to Effective Pruritus Assessment and Management

Cholestatic pruritus, or itch, is a prevalent and often debilitating symptom experienced by up to 89% of people living with primary biliary cholangitis (PBC). It can cause sleep problems, fatigue, social isolation, and, in extreme cases, suicidal ideation. Yet it is poorly understood, managed, and treated, making it a significant unmet medical need. A range of posters presented at the American Association for the Study of Liver Diseases (AASLD) ‘Liver Meeting 2024’ in November aimed to shine a light on the burden of pruritus and the importance of its identification, and to put forward validated measurement and monitoring instruments with the potential to enhance care. The presented data showed that pruritus significantly impacts quality of life (QoL), increases healthcare resource costs, and decreases work productivity; but despite such profound effects, many patients report inadequate relief from existing therapies. The posters also indicate that validated patient-reported outcome measures (PRO) can accurately assess itch severity and its impact on QoL, with tools such as the PBC-40 and Worst Itch Numerical Rating Scale (WI-NRS) demonstrating consistency and reliability to clinical trial standards. Understanding its severity and impact is crucial for effective pruritus management, and the key to improving patient care lies in its routine assessment. While the specific method of assessment may vary, the consistent use of PRO tools is essential in clinical practice to identify patients in need of intervention and to enhance their overall well-being.