title: Health-related quality of life among patients with primary sclerosing cholangitis.
abstract: OBJECTIVE
  To assess health-related quality of life (HRQoL) of patients with primary sclerosing cholangitis (PSC), and to compare it with that of the general population. Also, to examine changes in HRQoL in newly diagnosed PSC patients at a follow-up 1-2 years later, and to compare their HRQoL with HRQoL of newly diagnosed inflammatory bowel disease (IBD) patients. Furthermore, sources of and need for disease-related information among PSC patients were surveyed.
  
  
  METHODS
  Primary sclerosing cholangitis patients filled in the survey questionnaire when attending an endoscopic retrograde cholangiography examination. The 15D served as a general HRQoL instrument. The follow-up questionnaire was mailed to the newly diagnosed patients 1-2 years later.
  
  
  RESULTS
  No significant difference was seen in 15D scores between PSC patients and general population, but the dimensions of excretion (P < 0.001), depression (P = 0.003), distress (P = 0.003) and vitality (P = 0.005) were significantly lower in PSC. Age and symptoms affected HRQoL but severity of biliary changes did not. Those with newly diagnosed IBD had lower 15D scores than those with PSC. No significant changes were observed in 15D scores of new PSC patients in the follow-up. Many patients were dissatisfied with information received.
  
  
  CONCLUSIONS
  Newly diagnosed PSC patients have better HRQoL than do IBD patients, and no significant HRQoL changes were observed in the mean follow-up of 1.58 years after PSC diagnosis. ERC findings did not correlate with HRQoL or symptoms. HRQoL of PSC patients was mostly comparable with that of general population, but special attention should be paid to patients' psychological well-being.
authors.affiliation: Department of Gastroenterology, Helsinki University Central Hospital, Helsinki, Finland.
authors.forename: Johanna
authors.initials: J
authors.lastname: Haapamäki
authors.affiliation: Department of Gastroenterology, Helsinki University Central Hospital, Helsinki, Finland.|Gastroenterology and Endoscopy Unit, Department of Pathophysiology and Transplantation, Fondazione IRCCS Cà Granda Ospedale Maggiore Policlinico, Università degli Studi di Milano, Milan, Italy.
authors.forename: Andrea
authors.initials: A
authors.lastname: Tenca
authors.affiliation: Department of Public Health, Hjelt Institute, University of Helsinki, Helsinki, Finland.
authors.forename: Harri
authors.initials: H
authors.lastname: Sintonen
authors.affiliation: Department of Gastroenterology, Helsinki University Central Hospital, Helsinki, Finland.
authors.forename: Nina
authors.initials: N
authors.lastname: Barner-Rasmussen
authors.affiliation: Department of Gastroenterology, Helsinki University Central Hospital, Helsinki, Finland.|Institute of Clinical Medicine, University of Helsinki, Helsinki, Finland.
authors.forename: Martti A
authors.initials: MA
authors.lastname: Färkkilä
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D001706:Biopsy; D002758:Cholangiography; D049448:Cholangiopancreatography, Magnetic Resonance; D015209:Cholangitis, Sclerosing / Q000175:diagnosis* / Q000453:epidemiology; D005260:Female; D006801:Humans; D015212:Inflammatory Bowel Diseases / Q000175:diagnosis*; D008297:Male; D008875:Middle Aged; D011446:Prospective Studies; D011788:Quality of Life; D012720:Severity of Illness Index; D011795:Surveys and Questionnaires; D055815:Young Adult
keywords: endoscopic retrograde cholangiography; health-related quality of life; inflammatory bowel disease; primary sclerosing cholangitis