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Impact of primary biliary cirrhosis on perceived quality of life: The UK-PBC national study
Open accessAbstract
Primary biliary cirrhosis (PBC) has a complex clinical phenotype, with debate about the extent and specificity of frequently described systemic symptoms such as fatigue. The aim of this study was to use a national patient cohort of 2,353 patients recruited from all clinical centers in the UK to explore the impact of disease on perceived life quality. Clinical data regarding diagnosis, therapy, and biochemical status were collected and have been reported previously. Detailed symptom phenotyping using recognized and validated symptom assessment tools including the PBC-40 was also undertaken and is reported here. Perception of poor quality of life and impaired health status was common in PBC patients (35% and 46%, respectively) and more common than in an age-matched and sex-matched community control group (6% and 15%, P < 0.0001 for both). Fatigue and symptoms of social dysfunction were associated with impaired perceived quality of life using multivariate analysis. Fatigue was the symptom with the greatest impact. Depression was a significant factor, but appeared to be a manifestation of complex symptom burden rather than a primary event. Fatigue had its greatest impact on perceived quality of life when accompanied by symptoms of social dysfunction, suggesting that maintenance of social networks is critical for minimizing the impact of fatigue. Conclusion : The symptom burden in PBC, which is unrelated to disease severity or ursodeoxycholic acid response, is significant and complex and results in significant quality of life deficit. The complexity of symptom burden, and its lack of relation to disease severity and treatment response, suggest that specific approaches to symptom management are warranted that address both symptom biology and social impact. (Hepatology 2013;58:-)
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“The symptoms associated with PBC impact on QoL, and include: cholestatic pruritus, sicca complex, abdominal discomfort and fatigue [29,30].”
From EASL Clinical Practice Guidelines: The diagnosis and management of patients with primary biliary cholangitis. (2017) · cites this paper as [29]
Experimental — accuracy not yet measuredThe source backs part of the claim, not all of it — or backs it for a different population, condition or comparison.
In the citing paper
“Fatigued patients perceive a poor QoL compared to controls, and their levels of social engagement are lower [29,30].”
From EASL Clinical Practice Guidelines: The diagnosis and management of patients with primary biliary cholangitis. (2017) · cites this paper as [29]
Experimental — accuracy not yet measuredThe source backs part of the claim, not all of it — or backs it for a different population, condition or comparison.
In the citing paper
“Although fatigue is not specific to PBC, it is frequently reported by patients (over 50%) and when severe, as it is in 20% of patients, is a significant cause of QoL impairment.12 171 205–208”
From The British Society of Gastroenterology/UK-PBC primary biliary cholangitis treatment and management guidelines (2018) · cites this paper as [171]
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“Fatigue has been shown to be the symptom with the biggest impact on patients. Fatigued patients perceive a poor QoL compared with controls and their levels of social engagement are lower.171 219”
From The British Society of Gastroenterology/UK-PBC primary biliary cholangitis treatment and management guidelines (2018) · cites this paper as [171]
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“The symptoms associated with PBC have a significant impact on QoL for patients [29], and can be broad.”
From EASL Clinical Practice Guidelines: The diagnosis and management of patients with primary biliary cholangitis. (2017) · cites this paper as [29]
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“Fatigued patients perceive a poor QoL compared to controls, and their levels of social engagement are lower [29,30].”
From EASL Clinical Practice Guidelines: The diagnosis and management of patients with primary biliary cholangitis. (2017) · cites this paper as [29]
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“The symptoms of PBC significantly impair quality of life (182) and do not typically improve with UDCA or OCA treatment.”
From Primary Biliary Cholangitis: 2018 Practice Guidance from the American Association for the Study of Liver Diseases (2019) · cites this paper as [182]
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“The symptoms associated with PBC are important and have a significant impact on life quality for patients.171”
From The British Society of Gastroenterology/UK-PBC primary biliary cholangitis treatment and management guidelines (2018) · cites this paper as [171]
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Metadata
- Authors
- Mells, G. F., Pells, G., Newton, J. L., Bathgate, A. J., Burroughs, A. K., Heneghan, M. A., Neuberger, J. M., Day, D. B., Ducker, S. J., Sandford, R. N., Alexander, G. J., & Jones, D. E. J.
- Affiliations
- University of Cambridge (GB)
- Newcastle University (GB)
- NIHR Newcastle Biomedical Research Centre (GB)
- Edinburgh Royal Infirmary (GB)
- The Royal Free Hospital (GB)
- King's College Hospital NHS Foundation Trust (GB)
- Queen Elizabeth Hospital Birmingham (GB)
- Corresponding author
- Jones, David E.J.
- ORCID
- Venue
- Hepatology
- Published
- 2013-07
- Volume
- 58
- Issue
- 1
- Pages
- 273-283
- ISSN
- 0270-9139 (ISSN-L)
- OpenAlex
- W2093292173
- Semantic Scholar
- c3f7cee219b4024ce1b44b26b30d2b5f4b77d7e4
- Cited by
- 227
- References
- 29
- Citations by year
- 2026: 27 · 2025: 27 · 2024: 16 · 2023: 17 · 2022: 15 · 2021: 19 · 2020: 15 · 2019: 22 · 2018: 22 · 2017: 12 · 2016: 9 · 2015: 15 · 2014: 8 · 2013: 2
- FWCI
- 7.07
- Type
- journal article
- Language
- en
- Open access
- bronze
- doi.org
- Locations
- Hepatology (publishedVersion)
- PubMed (publishedVersion)
- Research Portal (King's College London) (publishedVersion, other-oa)
- Newcastle University ePrints (Newcastle Univesity)
- Funders
- Royal Devon and Exeter NHS Foundation Trust
- Wellcome Trust
- NHS Greater Glasgow and Clyde
- Sandwell and West Birmingham Hospitals NHS Trust
- Nottingham University Hospitals NHS Trust
- University Hospitals Bristol NHS Foundation Trust
- University Hospitals of Leicester NHS Trust
- Heart of England NHS Foundation Trust
- Royal Free London NHS Foundation Trust
- University Hospitals Plymouth NHS Trust
- National Institute for Health and Care Research (IS-BRC-0211-10046)
- University of Cambridge
- University of Southampton
- Imperial College London
- Imperial College Healthcare NHS Trust
- University College London
- Chelsea and Westminster Hospital NHS Foundation Trust
- Newcastle University
- University of Nottingham
- Cambridge University Hospitals
- Newcastle upon Tyne Hospitals NHS Foundation Trust
- Isaac Newton Trust
- North Bristol NHS Trust
- University College London Hospitals NHS Foundation Trust
- Norfolk and Norwich University Hospitals NHS Foundation Trust
- Sheffield Teaching Hospitals NHS Foundation Trust
- University Hospitals Coventry and Warwickshire NHS Trust
- Medical Research Council (MR/L001489/1, MR/K501037/1)
- Guy's and St Thomas' NHS Foundation Trust
- NIHR Newcastle Biomedical Research Centre (BH121729)
- Topics
- Health Sciences › Medicine › Hepatology › Liver Diseases and Immunity
- Health Sciences › Medicine › Surgery › Pediatric Hepatobiliary Diseases and Treatments
- Health Sciences › Medicine › Hepatology › Liver Disease and Transplantation
- Keywords
- primary biliary cirrhosis, quality of life, fatigue, social dysfunction, depression, symptom burden, health-related quality of life, symptom management, social networks
- MeSH terms
- Cross-Sectional Studies, Depression, Fatigue, Female, Humans, Liver Cirrhosis, Biliary, Male, Perception, Quality of Life, Surveys and Questionnaires, Cohort Studies
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