An integrated care pathway improves quality of life in Primary Biliary Cirrhosis
Open accessAbstract
BACKGROUND: Clinical management of the chronic autoimmune liver disease, Primary Biliary Cirrhosis (PBC) involves addressing the underlying liver disease and a range of symptoms independent of liver disease severity. We have formally explored how these two perspectives of chronic disease management can be combined into a clinic consultation and impact upon quality of life (QOL) in PBC. AIMS: To develop and implement the first Integrated Care Pathway (ICP) for the management of liver disease progression and symptom management in PBC. METHODS: Process mapping of current practice by a multidisciplinary group developed a flowchart of care from which the clinical record evolved. Symptom assessment is incorporated into the PBC ICP (QOL; PBC-40, autonomic symptoms; Orthostatic Grading Scale, daytime sleepiness; Epworth Sleepiness Scale). All patients were considered who attended clinic between July 2005 and June 2006. Symptom assessment was repeated after 1 year in those participating in the initial clinic cohort. RESULTS: The PBC ICP was successfully introduced into our clinical environment with high levels of patient satisfaction. A total of 225 PBC patients attended over 12 months. Initial QOL assessments were in 195 (87%). Five patients died (3%). Repeat assessment 1 year later occurred in 149 subjects (149/190; 78%). All symptom domains improved after ICP implementation with significant improvements in those with moderate and severe symptoms in all PBC-40 symptom domains (P < 0.02). In those with severe fatigue (n = 38) symptom improvement was even more dramatic (P = 0.002). CONCLUSION: ICP implementation delivers evidence-based care, leads to improvements in QOL coupled with high levels of patient satisfaction.
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A structured approach to fatigue management, including quantifying fatigue and its impacts, addressing contributing factors, and helping patients cope, has been shown effective.
“A structured approach to management, quantifying fatigue and its impacts (through the use of tools such as the PBC-40 QoL measure), addressing contributing factors and helping patients to cope with its impact have been shown to be effective [222].”
From EASL Clinical Practice Guidelines: The diagnosis and management of patients with primary biliary cholangitis. (2017) · cites this paper as [222]
The PBC-40 section describes measuring fatigue and its effects on quality of life. The Discussion describes a care pathway addressing daytime sleepiness, and the outcomes section reports improved fatigue scores among patients with severe fatigue. However, the copy does not establish that helping patients cope was a component of the pathway or an effective component in its own right; the reported fatigue improvement is specific to a subgroup. (LLM, conf=0.85)
Experimental — accuracy not yet measuredA structured approach to management, quantifying fatigue and its impacts, addressing contributing and exacerbating factors and supporting patients to cope with its impact has been shown to be effective.
“A structured approach to management, quantifying fatigue and its impacts (through the use of tools such as the PBC-40 QoL measure), addressing contributing and exacerbating factors and supporting patients to cope with its impact has been shown to be effective.212”
From The British Society of Gastroenterology/UK-PBC primary biliary cholangitis treatment and management guidelines (2018) · cites this paper as [212]
The PBC-40 section describes measuring fatigue and quality of life, and the Results and Discussion report improved scores after a structured care pathway was introduced for patients with PBC. The Discussion describes addressing daytime sleepiness through sleep hygiene, referral and, where appropriate, modafinil. Our copy does not establish that support to help patients cope with fatigue was a component of the pathway or that this component was effective. (LLM, conf=0.82)
Experimental — accuracy not yet measured
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- Authors
- Jones, D. E. J., Sutcliffe, K., Pairman, J., Wilton, K., & Newton, J. L.
- Affiliations
- Newcastle University (GB)
- ORCID
- Newton, J. L.
- Venue
- QJM
- Publisher
- Oxford University Press (OUP)
- Published
- 2008-03-04
- Volume
- 101
- Issue
- 7
- Pages
- 535-543
- ISSN
- 0033-5622 (ISSN-L)
- 1460-2725
- 1460-2393
- OpenAlex
- W2141276184
- Cited by
- 58
- References
- 22
- Citations by year
- 2026: 2 · 2025: 2 · 2024: 1 · 2022: 3 · 2021: 7 · 2019: 1 · 2018: 7 · 2017: 3 · 2016: 1 · 2015: 4 · 2014: 2 · 2013: 2 · 2012: 2
- FWCI
- 5.13
- Type
- journal article
- Language
- en
- Open access
- bronze
- doi.org
- Locations
- QJM (publishedVersion)
- PubMed (publishedVersion)
- HighWire Press Open Archive (submittedVersion)
- Newcastle University ePrints (Newcastle Univesity)
- Funders
- Medical Research Council
- Topics
- Health Sciences › Medicine › Hepatology › Liver Diseases and Immunity
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Clinical practice guidelines implementation
- Health Sciences › Medicine › Surgery › Pediatric Hepatobiliary Diseases and Treatments
- Keywords
- primary biliary cirrhosis, integrated care pathways, quality of life, symptom management, fatigue, autonomic symptoms, daytime sleepiness, patient satisfaction, multidisciplinary care
- MeSH terms
- Algorithms, Continuity of Patient Care, England, Fatigue, Female, Humans, Liver Cirrhosis, Biliary, Male, Middle Aged, Quality of Life, Sickness Impact Profile, Disease Progression, Critical Pathways
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