eprintid: 10082184 rev_number: 16 eprint_status: archive userid: 608 dir: disk0/10/08/21/84 datestamp: 2019-09-25 11:01:31 lastmod: 2021-10-14 22:59:46 status_changed: 2019-09-25 11:01:31 type: article metadata_visibility: show creators_name: Dyson, JK creators_name: Wilkinson, N creators_name: Jopson, L creators_name: Mells, G creators_name: Bathgate, A creators_name: Heneghan, MA creators_name: Neuberger, J creators_name: Hirschfield, GM creators_name: Ducker, SJ creators_name: UK-PBC Consortium, creators_name: Sandford, R creators_name: Alexander, G creators_name: Stocken, D creators_name: Jones, DEJ title: The inter-relationship of symptom severity and quality of life in 2055 patients with primary biliary cholangitis. ispublished: pub divisions: UCL divisions: B02 divisions: C10 divisions: D17 divisions: G91 note: This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited. https://creativecommons.org/licenses/by/4.0/ abstract: Background Age at presentation with primary biliary cholangitis (PBC) is associated with differential response to ursodeoxycholic acid (UDCA) therapy. Younger‐presenting patients are less likely to respond to treatment and more likely to need transplant or die from the disease. PBC has a complex impact on quality of life (QoL), with systemic symptoms often having significant impact. Aim To explain the impact of age at presentation on perceived QoL and the inter‐related symptoms which impact upon it. Methods Using the UK‐PBC cohort, symptoms were assessed using the PBC‐40 and other validated tools. Data were available on 2055 patients. Results Of the 1990 patients reporting a global PBC‐QoL score, 66% reported good/neutral scores and 34% reported poor scores. Each 10‐year increase in age at presentation was associated with a 14% decrease in risk of poor perceived QoL (OR = 0.86, 95% CI: 0.75–0.98, P < 0.05). All symptom domains were similarly age‐associated (P < 0.01). Social dysfunction was the symptom factor with the greatest impact on QoL. Median (interquartile range) PBC‐40 social scores for patients with good perceived QoL were 18 (14–23) compared with 34 (29–39) for those with poor QoL. Conclusion The majority of patients with primary biliary cholangitis do not feel their QoL is impaired, although impairment is reported by a sizeable minority. Age at presentation is associated with impact on perceived QoL and the symptoms impairing it, with younger patients being more affected. Social dysfunction makes the greatest contribution to QoL impairment, and it should be targeted in trials aimed at improving life quality date: 2016-11 date_type: published official_url: https://doi.org/10.1111/apt.13794 oa_status: green full_text_type: pub pmcid: PMC5082554 language: eng primo: open primo_central: open_green article_type_text: Journal Article verified: verified_manual elements_id: 1667362 doi: 10.1111/apt.13794 lyricists_name: Alexander, Graeme lyricists_id: GALEX45 actors_name: Bracey, Alan actors_id: ABBRA90 actors_role: owner full_text_status: public publication: Alimentary Pharmacology and Therapeutics volume: 44 number: 10 pagerange: 1039-1050 event_location: England issn: 1365-2036 citation: Dyson, JK; Wilkinson, N; Jopson, L; Mells, G; Bathgate, A; Heneghan, MA; Neuberger, J; ... Jones, DEJ; + view all <#> Dyson, JK; Wilkinson, N; Jopson, L; Mells, G; Bathgate, A; Heneghan, MA; Neuberger, J; Hirschfield, GM; Ducker, SJ; UK-PBC Consortium; Sandford, R; Alexander, G; Stocken, D; Jones, DEJ; - view fewer <#> (2016) The inter-relationship of symptom severity and quality of life in 2055 patients with primary biliary cholangitis. Alimentary Pharmacology and Therapeutics , 44 (10) pp. 1039-1050. 10.1111/apt.13794 <https://doi.org/10.1111/apt.13794>. Green open access document_url: https://discovery.ucl.ac.uk/id/eprint/10082184/1/apt.13794.pdf