Understanding Fatigue in Primary Biliary Cholangitis
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ORIGINAL ARTICLE
Understanding Fatigue in Primary Biliary Cholangitis Naw April Phaw1,2 · Jessica Katharine Dyson1,2 · George Mells3 · David Jones1,2 Received: 18 May 2020 / Accepted: 18 July 2020 © Springer Science+Business Media, LLC, part of Springer Nature 2020
Abstract Background Fatigue affects 50% of primary biliary cholangitis patients and is severe in approximately 20%, significantly affecting quality of life. The pathogenesis of fatigue in primary biliary cholangitis is poorly understood. This study aimed to explore subgroups of fatigue to support targeting of selected groups in future clinical trials. Methods Data were derived from the UK-PBC cohort. Participants completed the PBC-40, Hospital Anxiety and Depression Score, Epworth Sleepiness Scale, and Orthostatic Grading Scale for symptoms assessment. Fatigue and cognitive symptoms were regarded as clinically significant if they exceeded the previously defined cutoff for “moderate” symptom. Results Of 2002, patients for whom full PBC-40, fatigue, and cognitive symptom domain scores were available, 1203 (60%) had significant fatigue and 730 (36%) had significant cognitive symptoms. Among the 1203 patients with significant fatigue, 663 (55%) also had significant cognitive symptoms (termed fatigue with cognitive symptoms) with a significant linear association between the fatigue and cognitive symptom severity. “Fatigue with cognitive symptoms” patients were younger and more likely to have severe fatigue. They also experienced greater social and emotional impact. Conclusions Fatigue in PBC is complex, and there has been no progress to date in identifying therapies able to improve it. One factor in slow progress may be the heterogeneity of patients describing fatigue complicating effective cohort selection for clinical trials. This study has identified potential discrete subgroups of fatigued patients with and without cognitive symptoms. The group of patients expressing “fatigue with cognitive symptoms” was homogenous and may represent a coherent cohort for clinical trials. Keywords Primary biliary cholangitis · Fatigue · Cognitive impairment · Cholestasis
Introduction Electronic supplementary material The online version of this article (https://doi.org/10.1007/s10620-020-06502-0) contains supplementary material, which is available to authorized users. * David Jones [email protected] Naw April Phaw [email protected] Jessica Katharine Dyson [email protected] George Mells [email protected] 1
Institute of Translational and Clinical Research, Level 4 William Leech Building, Newcastle University, Framlington Place, Newcastle‑upon‑Tyne NE2 4HH, UK
2
Newcastle Hospital NHS Foundation Trust, Newcastle‑upon‑Tyne, UK
3
Department of Hepatology, Cambridge University Hospital NHS Foundation Trust, Cambridge, UK
Fatigue is a common problem in primary biliary cholangitis (PBC), with approximately 50% of patients experiencing either moderate or severe fatigue as assessed using the PBC-40, a fully validated, disease-speci
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