title: Quality of life in paediatric inflammatory bowel disease measured by a generic and a disease-specific questionnaire.
abstract: This study assessed the impact of inflammatory bowel disease (IBD) on the health-related quality of life (HRQoL) of children and adolescents, using both a generic and a disease-specific instrument. Three questionnaires were sent to all patients (8-18 y old) from the database of two large secondary/tertiary hospitals in the western part of The Netherlands. In total, 83 (66%) children responded, 18 were between 8 and 12 y old and the remaining 65 were older. HRQoL was measured using a generic instrument, the TNO-AZL Children's Quality of Life questionnaire (TACQOL), assessing seven domains, and the Impact-II (NL), a disease-specific instrument assessing six domains. Disease activity was measured by a five-item symptom card. Compared with scores from a large reference population (n= 1810), younger children with IBD had a comparable HRQoL (measured by the TACQOL) on six domains, and better cognitive functioning, although they did not have severely active disease. Adolescent patients with IBD had a significantly impaired HRQoL on four domains (body complaints, motor functioning, autonomy and negative emotions). The Impact-II discriminated well between patients with varying disease activity states on all domains.
  
  
  CONCLUSIONS
  Adolescents with IBD have a severely affected HRQoL. Impairment on motor functioning and autonomy is a threat to gaining independence from caregivers, and a high occurrence of negative emotions places patients at risk for depressive and behavioural disorders. The Impact-II is recommended for clinical use because of its high discriminative validity.
authors.affiliation: Department of Paediatrics, Emma Children's Hospital, AMC, Amsterdam, The Netherlands.
authors.forename: H J
authors.initials: HJ
authors.lastname: Loonen
authors.forename: M A
authors.initials: MA
authors.lastname: Grootenhuis
authors.forename: B F
authors.initials: BF
authors.lastname: Last
authors.forename: H M
authors.initials: HM
authors.lastname: Koopman
authors.forename: H H F
authors.initials: HH
authors.lastname: Derkx
mesh_terms: D000293:Adolescent; D000367:Age Factors; D000704:Analysis of Variance; D002648:Child; D005260:Female; D006306:Health Surveys; D006801:Humans; D015212:Inflammatory Bowel Diseases / Q000175:diagnosis* / Q000523:psychology*; D008297:Male; D009426:Netherlands; D010358:Patient Participation; D011336:Probability; D011788:Quality of Life; D012720:Severity of Illness Index; D012737:Sex Factors; D018434:Sickness Impact Profile; D018709:Statistics, Nonparametric; D011795:Surveys and Questionnaires