Pruritus Is Frequent and Persistent and Impacts Quality of Life Among Patients With Primary Sclerosing Cholangitis

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ABSTRACT Background Pruritus is a common and burdensome symptom in patients with primary sclerosing cholangitis ( PSC ). Aims To determine the prevalence of pruritus in PSC , its clinical associations, and its impact on quality of life. Methods Patients with PSC were assessed for pruritus using the Worst Itch Numerical Rating Scale ( WI ‐ NRS ) and 5‐D Itch scale, and for quality of life using SF ‐36 and PSC ‐ PRO . Participants reporting moderate to severe pruritus ( WI ‐ NRS ≥ 4) within 6 months of enrollment completed longitudinal assessments for up to 6 months. Those with inflammatory bowel disease ( IBD ) completed the Simple Clinical Colitis Activity Index (P‐ SCCAI ). Results Median age was 43 years, 61% were male and 75% had IBD . Moderate to severe itch over the prior 7 days was reported by 24%, increasing to 38% over the prior 6 months. Greater pruritus was associated with cirrhosis ( p = 0.01), alkaline phosphatase ( p = 0.0001), total bilirubin ( p = 0.0006) and lower albumin ( p = 0.01). Among patients with IBD , itch severity was associated with colitis activity ( p = 0.01). Pruritus associated with impaired quality of life on the SF ‐36 ( r s = −0.47) and PSC ‐ PRO ( r s = 0.69). Longitudinally, pruritus varied markedly with 86.5% of patients reporting moderate to severe pruritus in the past 6 months experiencing severe itch at least once over 6 months. Conclusions Pruritus is common, clinically meaningful and fluctuates over time in PSC . Its strong impact on quality‐of‐life underscores the need for standardized assessment and development of more effective therapies.

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