title: Quality of Life in Swiss Paediatric Inflammatory Bowel Disease Patients: Do Patients and Their Parents Experience Disease in the Same Way?
abstract: OBJECTIVE
  Inflammatory bowel diseases (IBDs) may impair quality of life (QoL) in paediatric patients. We aimed to evaluate in a nationwide cohort whether patients experience QoL in a different way when compared with their parents.
  
  
  METHODS
  Sociodemographic and psychosocial characteristics were prospectively acquired from paediatric patients and their parents included in the Swiss IBD Cohort Study. Disease activity was evaluated by the Paediatric Crohn's Disease Activity Index (PCDAI) and the Paediatric Ulcerative Colitis Activity Index (PUCAI). We assessed QoL using the KIDSCREEN questionnaire. The QoL domains were analysed and compared between children and parents according to type of disease, parents' age, origin, education and marital status.
  
  
  RESULTS
  We included 110 children and parents (59 Crohn's disease [CD], 45 ulcerative colitis [UC], 6 IBD unclassified [IBDU]). There was no significant difference in QoL between CD and UC/IBDU, whether the disease was active or in remission. Parents perceived overall QoL, as well as 'mood', 'family' and 'friends' domains, lower than the children themselves, independently of their place of birth and education. However, better concordance was found on 'school performance' and 'physical activity' domains. Marital status and age of parents significantly influenced the evaluation of QoL. Mothers and fathers being married or cohabiting perceived significantly lower mood, family and friends domains than their children, whereas mothers living alone had a lower perception of the friends domain; fathers living alone had a lower perception of family and mood subscores.
  
  
  CONCLUSIONS
  Parents of Swiss paediatric IBD patients significantly underestimate overall QoL and domains of QoL of their children independently of origin and education.
authors.affiliation: Division of Pediatric Gastroenterology, University Hospital of Lausanne, Lausanne, Switzerland.
authors.forename: Rebekka
authors.initials: R
authors.lastname: Mueller
authors.affiliation: Division of Pediatric Gastroenterology, University Hospital of Lausanne, Lausanne, Switzerland.
authors.forename: Farah
authors.initials: F
authors.lastname: Ziade
authors.affiliation: Institute of Social and Preventive Medicine, University Hospital of Lausanne and University of Lausanne, Lausanne, Switzerland.
authors.forename: Valérie
authors.initials: V
authors.lastname: Pittet
authors.affiliation: Institute of Social and Preventive Medicine, University Hospital of Lausanne and University of Lausanne, Lausanne, Switzerland.
authors.forename: Nicolas
authors.initials: N
authors.lastname: Fournier
authors.affiliation: Division of Pediatric Gastroenterology, University Hospital of Lausanne, Lausanne, Switzerland.
authors.forename: Jessica
authors.initials: J
authors.lastname: Ezri
authors.affiliation: Division of Gastroenterology and Hepatology, University Hospital of Lausanne, Lausanne, Switzerland.
authors.forename: Alain
authors.initials: A
authors.lastname: Schoepfer
authors.affiliation: Division of Gastroenterology, University Children's Hospital of Bern, Bern, Switzerland.
authors.forename: Susanne
authors.initials: S
authors.lastname: Schibli
authors.affiliation: Division of Gastroenterology, University Children's Hospital of Bern, Bern, Switzerland Division of Gastroenterology, Children's Hospital of Lucerne, Lucerne, Switzerland.
authors.forename: Johannes
authors.initials: J
authors.lastname: Spalinger
authors.affiliation: Division of Gastroenterology and Nutrition, University Children's Hospital of Zurich, Zurich, Switzerland.
authors.forename: Christian
authors.initials: C
authors.lastname: Braegger
authors.affiliation: Division of Pediatric Gastroenterology, University Hospital of Lausanne, Lausanne, Switzerland andreas.nydegger@chuv.ch.
authors.forename: Andreas
authors.initials: A
authors.lastname: Nydegger
mesh_terms: D000293:Adolescent; D002648:Child; D003093:Colitis, Ulcerative / Q000523:psychology*; D003424:Crohn Disease / Q000523:psychology*; D005260:Female; D006305:Health Status Indicators; D006801:Humans; D008297:Male; D010290:Parents / Q000523:psychology*; D010465:Perception; D011446:Prospective Studies; D011788:Quality of Life / Q000523:psychology*; D012959:Socioeconomic Factors; D013557:Switzerland
keywords: Inflammatory bowel disease; paediatric; quality of life