title: [Quality of life assessment in Inflammatory Bowel Disease (IBD): German version of the Inflammatory Bowel Disease Questionnaire (IBDQ-D; disease-specific instrument for quality of life assessment) -- first application and comparison with international investigations].
abstract: BACKGROUND
  Health-related quality of life (HRQOL) is an important outcome-parameter in health research and care. The aim of the working group Quality of Life in the Competence Network Inflammatory Bowel Disease (IBD; in the original German: "Kompetenznetz chronisch entzündliche Darmerkrankungen") is to generate instruments for assessment of HRQOL and its implementation as standards in clinical trials, health care and research in IBD.
  
  
  METHODS
  The Inflammatory Bowel Disease Questionnaire (IBDQ) is an international validated disease specific instrument for HRQOL-assessment. A German version of the IBDQ was elaborated and tested in 415 outpatients with Crohn's disease (CD, n = 306) and ulcerative colitis (UC, n = 109). The aim of the study was to compare the results of HRQOL-assessment (IBDQ-D) with international investigations, to correlate HRQOL results with disease activity and to preform a pretest of psychometric properties.
  
  
  RESULTS
  International data suggest that the IBDQ-D is a suitable instrument for HRQOL-assessment in CD and UC. For both disease a statistically significant negative correlation with disease activity was found. Tested psychometric properties do not suggest that a revision of the IBDQ-D is required. The IBDQ-D offers the HRQOL-assessment as an primary or secondary outcome in clinical trials in IBD in Germany.
authors.affiliation: Universitätsklinikum Tübingen, Abteilung Innere Medizin I, Kompetenznetz CED -- Core Facility Tübingen.
authors.forename: K-H
authors.initials: KH
authors.lastname: Janke
authors.forename: U
authors.initials: U
authors.lastname: Steder-Neukamm
authors.forename: M
authors.initials: M
authors.lastname: Bauer
authors.forename: A
authors.initials: A
authors.lastname: Raible
authors.forename: C
authors.initials: C
authors.lastname: Meisner
authors.forename: J C
authors.initials: JC
authors.lastname: Hoffmann
authors.forename: M
authors.initials: M
authors.lastname: Gregor
authors.forename: B
authors.initials: B
authors.lastname: Klump
authors.forename: W
authors.initials: W
authors.lastname: Häuser
mesh_terms: D000328:Adult; D003625:Data Collection / Q000379:methods*; D005260:Female; D005858:Germany / Q000453:epidemiology; D006801:Humans; D015212:Inflammatory Bowel Diseases / Q000453:epidemiology* / Q000523:psychology*; D008297:Male; D010865:Pilot Projects; D011785:Quality Assurance, Health Care / Q000379:methods*; D011788:Quality of Life; D015203:Reproducibility of Results; D012680:Sensitivity and Specificity