title: Development and Validation of a Questionnaire to Assess the Quality of Life in Patients with Inflammatory Bowel Disease in Mainland China.
abstract: Inflammatory bowel disease (IBD) affects the quality of patients' life in many ways. The aim of this study was to develop and validate a mainland Chinese version of IBD quality-of-life questionnaire for ulcerative colitis (UC) and Crohn's disease (CD).
  
  
  
  A draft questionnaire containing 30 items was generated from a descriptive qualitative study, literature review and consulting with IBD patients and experts. The validity, discriminant ability, reliability, and sensitivity to change were validated in 336 patients with IBD.
  
  
  
  A 22-item IBD quality-of-life questionnaire (IBDQOL-22) with 4 domains was developed. The 4 domain scores of the IBDQOL-22 correlated well with the related SF-36 (36-Item Short Form Health Survey) dimensional scores in UC (r = 0.42-0.75) and CD (r = 0.41-0.66). The total scores of the IBDQOL-22 correlated well with the physical component summary scores of the SF-36 in UC (r = 0.74) and CD (r = 0.74), the mental component summary scores of the SF-36 in UC (r = 0.77) and CD (r = 0.71), the colitis activity index in UC (r = -0.61) and the CD activity index (r = -0.53). It was able to discriminate between patients with active and inactive disease. Cronbach's alpha for the 4 domains of the IBDQOL-22 ranged from 0.77 to 0.90 in UC and from 0.76 to 0.89 in CD. Test-retest reliability was excellent (intraclass correlation coefficient was 0.88-0.95 in UC and 0.72-0.90 in CD). The 3 domains of the IBDQOL-22 (emotional function, symptoms and discomfort, bowel symptoms and its influences) were able to detect changes in patients whose clinical activity index changed more than one point.
  
  
  
  The IBDQOL-22 is a valid, reliable, and responsive instrument for assessing disease-specific quality-of-life in patients with IBD in Mainland China.
authors.affiliation: *School of Nursing, Zhejiang Chinese Medical University, Hangzhou, Zhejiang, China; and †Division of Gastroenterology, The Second Affiliated Hospital, School of Medicine, Zhejiang University, Hangzhou, Zhejiang, China.
authors.forename: Jiayin
authors.initials: J
authors.lastname: Ruan
authors.forename: Yan
authors.initials: Y
authors.lastname: Chen
authors.forename: Yunxian
authors.initials: Y
authors.lastname: Zhou
mesh_terms: D000328:Adult; D000368:Aged; D002681:China; D003093:Colitis, Ulcerative / Q000523:psychology*; D003424:Crohn Disease / Q000523:psychology*; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D011788:Quality of Life; D015203:Reproducibility of Results; D012720:Severity of Illness Index; D011795:Surveys and Questionnaires / Q000592:standards*; D014177:Translations; D055815:Young Adult