title: Health-related quality of life in the first year after a diagnosis of pediatric inflammatory bowel disease.
abstract: OBJECTIVE
  Assessment of health-related quality of life (HRQOL) is of increasing importance in the evaluation of new therapies for inflammatory bowel disease (IBD). Available data concerning HRQOL in pediatric patients are sparse and uniformly cross-sectional. The aim of this study was to describe HRQOL and influential factors in newly diagnosed pediatric patients with Crohn's disease and ulcerative colitis during the first 12 months after diagnosis.
  
  
  METHODS
  Participants were drawn from a large, prospectively derived observational IBD registry of pediatric patients studied through 18 U.S. and Canadian centers. Patients who had completed a baseline IMPACT questionnaire and for whom there were 12 months of follow-up data available were included. In addition to description of cohort, factors that were believed to influence HLQOL were assessed during the course of the year from diagnosis.
  
  
  RESULTS
  Two hundred eighteen children met inclusion criteria (77% Crohn's disease, 23 % ulcerative colitis, mean age 12.7 +/- 1.9 years). Mean total IMPACT score at baseline was 154, 181 at 6 months, and 191 at 1 year (possible range 0-238, with increasing scores representing better quality of life). Repeated measures analysis showed that age and disease severity significantly negatively affected the IMPACT scores during the course of the year.
  
  
  CONCLUSIONS
  In this large prospective pediatric IBD cohort, significant improvement in HRQOL is noted during the year from diagnosis. Mean IMPACT scores varied significantly depending on the disease severity and also decreased with increasing age.
authors.affiliation: FRCPC, Division of Gastroenterology & Nutrition, IWK Health Centre, Halifax, Nova Scotia, Canada. arotley@dal.ca
authors.forename: Anthony R
authors.initials: AR
authors.lastname: Otley
authors.forename: Anne M
authors.initials: AM
authors.lastname: Griffiths
authors.forename: Sandra
authors.initials: S
authors.lastname: Hale
authors.forename: Subra
authors.initials: S
authors.lastname: Kugathasan
authors.forename: Marian
authors.initials: M
authors.lastname: Pfefferkorn
authors.forename: Adam
authors.initials: A
authors.lastname: Mezoff
authors.forename: Joel
authors.initials: J
authors.lastname: Rosh
authors.forename: Vasundhara
authors.initials: V
authors.lastname: Tolia
authors.forename: James
authors.initials: J
authors.lastname: Markowitz
authors.forename: David
authors.initials: D
authors.lastname: Mack
authors.forename: Maria
authors.initials: M
authors.lastname: Oliva-Hemker
authors.forename: Robert
authors.initials: R
authors.lastname: Wyllie
authors.forename: Robert
authors.initials: R
authors.lastname: Rothbaum
authors.forename: Athos
authors.initials: A
authors.lastname: Bousvaros
authors.forename: J Fernando
authors.initials: JF
authors.lastname: Del Rosario
authors.forename: Jonathan
authors.initials: J
authors.lastname: Evans
authors.forename: Wade
authors.initials: W
authors.lastname: Blanchard
authors.forename: Jeffrey
authors.initials: J
authors.lastname: Hyams
mesh_terms: D000293:Adolescent; D002648:Child; D015331:Cohort Studies; D003093:Colitis, Ulcerative / Q000523:psychology; D003424:Crohn Disease / Q000523:psychology; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D008297:Male; D011788:Quality of Life; D012042:Registries; D012044:Regression Analysis; D012720:Severity of Illness Index; D011795:Surveys and Questionnaires