DOI: 10.1111/apt.70931 ISSN: 0269-2813

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

Richard Dean, Maryam Yazdanfar, Joseph Zepeda, Isha J. Patel, Cynthia Levy, Craig Lammert, Raghav Bordia, Duru Cosar, Katherine Specht, Daniel Pratt, Stuart C. Gordon, Lisa Forman, Fawzy Barry, Michael Li, Usha Gungabissoon, Megan M. McLaughlin, Christopher L. Bowlus

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 ( WINRS ) and 5‐D Itch scale, and for quality of life using SF ‐36 and PSCPRO . Participants reporting moderate to severe pruritus ( WINRS ≥ 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 PSCPRO ( 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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