title: An integrated care pathway improves quality of life in Primary Biliary Cirrhosis.
abstract: 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.
  
  
  OBJECTIVE
  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).
  
  
  CONCLUSIONS
  ICP implementation delivers evidence-based care, leads to improvements in QOL coupled with high levels of patient satisfaction.
authors.affiliation: Institute of Cellular Medicine, Newcastle University, Newcastle NE24HH, UK.
authors.forename: David E J
authors.initials: DE
authors.lastname: Jones
authors.forename: Katy
authors.initials: K
authors.lastname: Sutcliffe
authors.forename: Jessie
authors.initials: J
authors.lastname: Pairman
authors.forename: Katharine
authors.initials: K
authors.lastname: Wilton
authors.forename: Julia L
authors.initials: JL
authors.lastname: Newton
mesh_terms: D000465:Algorithms; D003266:Continuity of Patient Care / Q000592:standards*; D019091:Critical Pathways; D018450:Disease Progression; D004739:England; D005221:Fatigue / Q000523:psychology / Q000628:therapy*; D005260:Female; D006801:Humans; D008105:Liver Cirrhosis, Biliary / Q000523:psychology / Q000628:therapy*; D008297:Male; D008875:Middle Aged; D011788:Quality of Life / Q000523:psychology*; D018434:Sickness Impact Profile