title: Measuring quality of life in pediatric patients with inflammatory bowel disease: psychometric and clinical characteristics.
abstract: OBJECTIVE
  To extend development of a pediatric inflammatory bowel disease (IBD) health-related quality of life (HRQoL) measure by determining its factor structure and associations of factors with generic HRQoL measures and clinical variables.
  
  
  METHODS
  Cross-sectional survey of children and adolescents ages 8 years to 18 years and their parents attending any of 6 US IBD centers, recruited from either existing registry of age-eligible subjects or visits to participating centers. The survey included generic (Pediatric Quality of Life Inventory) and IBD-specific (Impact Questionnaire) quality of life measures, disease activity, and other clinical indicators. We carried out factor analysis of Impact responses, comparing resulting factors with results on the generic HRQoL and the clinical measures.
  
  
  RESULTS
  We included 220 subjects (161 with Crohn disease and 59 with ulcerative colitis). Initial confirmatory factor analysis did not support the 6 proposed Impact domains. Exploratory factor analysis indicated 4 factors with good to excellent reliability for IBD responses: general well-being and symptoms, emotional functioning, social interactions, and body image. Two items did not load well on any factor. The 4 factors correlated well with the Pediatric Quality of Life Inventory and subscales. Children with higher disease activity scores and other indicators of clinical activity reported lower HRQoL.
  
  
  CONCLUSIONS
  This study provides further characteristics of a HRQoL measure specific to pediatric IBD and indicates ways to score the measure based on the resulting factor structure. The measure correlates appropriately with generic HRQoL measures and clinical severity indicators.
authors.affiliation: Department of Pediatrics, MassGeneral Hospital for Children, Boston, USA. jperrin@partners.org
authors.forename: James M
authors.initials: JM
authors.lastname: Perrin
authors.forename: Karen
authors.initials: K
authors.lastname: Kuhlthau
authors.forename: Aziz
authors.initials: A
authors.lastname: Chughtai
authors.forename: Diane
authors.initials: D
authors.lastname: Romm
authors.forename: Barbara S
authors.initials: BS
authors.lastname: Kirschner
authors.forename: George D
authors.initials: GD
authors.lastname: Ferry
authors.forename: Stanley A
authors.initials: SA
authors.lastname: Cohen
authors.forename: Benjamin D
authors.initials: BD
authors.lastname: Gold
authors.forename: Melvin B
authors.initials: MB
authors.lastname: Heyman
authors.forename: Robert N
authors.initials: RN
authors.lastname: Baldassano
authors.forename: Harland S
authors.initials: HS
authors.lastname: Winter
mesh_terms: D000293:Adolescent; D001828:Body Image; D002648:Child; D002908:Chronic Disease; D003430:Cross-Sectional Studies; D005163:Factor Analysis, Statistical; D005260:Female; D006801:Humans; D015212:Inflammatory Bowel Diseases / Q000473:pathology* / Q000523:psychology*; D008297:Male; D011788:Quality of Life; D012720:Severity of Illness Index; D012917:Social Adjustment; D013315:Stress, Psychological; D011795:Surveys and Questionnaires