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The inter-relationship of symptom severity and quality of life in 2055 patients with primary biliary cholangitis

Lookup NU author(s): Dr Jess Dyson, Dr Nina WilsonORCiD, Dr Laura Jopson, Samantha Ducker, Dr Deborah Stocken, Professor David Jones



This work is licensed under a Creative Commons Attribution 4.0 International License (CC BY 4.0).


BackgroundAge at presentation with primary biliary cholangitis (PBC) is associated with differ-ential response to ursodeoxycholic acid (UDCA) therapy. Younger-presentingpatients are less likely to respond to treatment and more likely to need transplantor die from the disease. PBC has a complex impact on quality of life (QoL), withsystemic symptoms often having significant impact.AimTo explain the impact of age at presentation on perceived QoL and the inter-related symptoms which impact upon it.MethodsUsing the UK-PBC cohort, symptoms were assessed using the PBC-40 and othervalidated tools. Data were available on 2055 patients.ResultsOf the 1990 patients reporting a global PBC-QoL score, 66% reported good/neutralscores and 34% reported poor scores. Each 10-year increase in age at presentationwas associated with a 14% decrease in risk of poor perceived QoL (OR = 0.86,95% CI: 0.75–0.98, P < 0.05). All sympto m domains were similarly age-associated(P < 0.01). Social dysfunction was the symptom factor with the greatest impa ct onQoL. Median (interquartile range) PBC-40 social scores for patient s with good per-ceived QoL were 18 (14–23) compared with 34 (29–39) for those with poor QoL.ConclusionThe majo rity of patients with primary biliary cholangitis do not feel their QoL isimpaired, although impairment is reported by a sizeable minority. Age at presenta-tion is associated with impact on per ceived QoL and the symptoms impairing it,with younger patients being more affected. Social dysfunction makes the greatestcontribution to QoL impairment, and it should be targeted in trials aimed atimproving life quality.

Publication metadata

Author(s): Dyson JK, Wilkinson N, Jopson L, Mells G, Bathgate A, Heneghan MA, Neuberger J, Hirschfield M, Ducker SJ, The UK-PBC Consortium, Sandford R, Alexander G, Stocken D, Jones DEJ

Publication type: Article

Publication status: Published

Journal: Alimentary Pharmacology & Therapeutics

Year: 2016

Volume: 44

Issue: 10

Pages: 1039–1050

Print publication date: 01/11/2016

Online publication date: 19/09/2016

Acceptance date: 15/08/2016

Date deposited: 07/11/2016

ISSN (print): 0269-2813

ISSN (electronic): 1365-2036

Publisher: Wiley-Blackwell Publishing Ltd.


DOI: 10.1111/apt.13794


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Funder referenceFunder name
National Institute for Health Research (NIHR) Newcastle Biomedical Research Centre based at Newcastle upon Tyne Hospitals NHS Foundation Trust and Newcastle University
MR/L001489/1Medical Research Council
MR/L001489/1Medical Research Council (MRC)