An integrated care pathway improves quality of life in Primary Biliary Cirrhosis

QJM. 2008 Jul;101(7):535-43. doi: 10.1093/qjmed/hcn043. Epub 2008 Apr 3.


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.

Publication types

  • Evaluation Study

MeSH terms

  • Algorithms
  • Continuity of Patient Care / standards*
  • Critical Pathways*
  • Disease Progression
  • England
  • Fatigue / psychology
  • Fatigue / therapy*
  • Female
  • Humans
  • Liver Cirrhosis, Biliary / psychology
  • Liver Cirrhosis, Biliary / therapy*
  • Male
  • Middle Aged
  • Quality of Life / psychology*
  • Sickness Impact Profile