Quality of Life in Patients With Primary Sclerosing Cholangitis

IF 3.3

Gastro hep advances Pub Date : 2026-01-01 Epub Date: 2026-04-10 DOI:10.1016/j.gastha.2026.100964

Emilie Eifer Møller , Rasmus Hvidbjerg Gantzel , Emma Celia Herting , Anders Mellemkjær , Lars Bossen , Matias Hauge Bötcher , Søren Peter Jørgensen , Holger Jon Møller , Henning Grønbæk

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引用次数: 0

Abstract

Background and Aims

Primary sclerosing cholangitis (PSC) is an autoimmune chronic cholestatic liver disease causing inflammation, fibrosis, and increased risk of cholangitis, cirrhosis, and hepatobiliary cancers. How PSC affects patient-reported quality of life (QoL) is sparsely studied. We aimed to investigate the impact of PSC on QoL.

Methods

This cross-sectional study included 101 patients with PSC. We investigated QoL using the PSC-specific PSC patient-reported outcome (PRO) instrument, the generic health-related QoL questionnaire EQ-5D-5L, and the fatigue visual analog scale (VAS) score. We also investigated associations between QoL and noninvasive inflammation and fibrosis measures; the macrophage marker soluble (s)CD163, fibrosis-4 score, and transient elastography.

Results

The median age was 45 years, 65% were males, 10% had PSC with autoimmune hepatitis overlap disease, and 92% had inflammatory bowel disease. Eighty-five patients completed all QoL questionnaires and reported high QoL across all PSC PRO instrument items and EQ-5D-5L. sCD163 correlated modestly with PSC PRO total score (rho = 0.28) and fatigue VAS score (rho = 0.26) but not EQ-5D-5L. Patients with any previous episode of cholangitis reported lower QoL than cholangitis-naive patients on the PSC PRO score (21 vs 15, P = .04) and EQ-5D-5L VAS score (71 vs 86, P = .01). There was no association between noninvasive markers of liver fibrosis and QoL.

Conclusion

In this cohort, patients with PSC reported high QoL. The PSC PRO score correlated with sCD163 and was sensitive to cholangitis episodes, validating the instrument as a true PSC-specific QoL tool.

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原发性硬化性胆管炎患者的生活质量

背景和目的原发性硬化性胆管炎（PSC）是一种自身免疫性慢性胆汁淤积性肝病，可引起炎症、纤维化，并增加胆管炎、肝硬化和肝癌的风险。PSC如何影响患者报告的生活质量（QoL）的研究很少。我们的目的是研究PSC对生活质量的影响。方法对101例PSC患者进行横断面研究。我们使用PSC特异性PSC患者报告结果（PRO）仪器、通用健康相关生活质量问卷EQ-5D-5L和疲劳视觉模拟量表（VAS）评分来调查生活质量。我们还研究了生活质量与非侵入性炎症和纤维化措施之间的关系；巨噬细胞标志物可溶性CD163、纤维化-4评分和瞬时弹性成像。结果中位年龄为45岁，65%为男性，10%为PSC合并自身免疫性肝炎重叠病，92%为炎症性肠病。85例患者完成了所有的生活质量问卷，报告了PSC PRO仪器项目和EQ-5D-5L的高生活质量。sCD163与PSC PRO总分（rho = 0.28）和疲劳VAS评分（rho = 0.26）呈正相关，而EQ-5D-5L无显著相关。在PSC PRO评分（21比15，P = 0.04）和EQ-5D-5L VAS评分（71比86，P = 0.01）上，任何既往胆管炎发作的患者的生活质量均低于胆管炎初发患者。无创肝纤维化指标与生活质量无相关性。结论在该队列中，PSC患者的生活质量较高。PSC PRO评分与sCD163相关，对胆管炎发作敏感，验证了该仪器是真正的PSC特异性生活质量工具。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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