Quality of life in paediatric inflammatory bowel disease measured by a generic and a disease-specific questionnaire

Acta Paediatr. 2002;91(3):348-54. doi: 10.1080/08035250252834049.


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.

Conclusion: 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.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adolescent
  • Age Factors
  • Analysis of Variance
  • Child
  • Female
  • Health Surveys
  • Humans
  • Inflammatory Bowel Diseases / diagnosis*
  • Inflammatory Bowel Diseases / psychology*
  • Male
  • Netherlands
  • Patient Participation
  • Probability
  • Quality of Life*
  • Severity of Illness Index
  • Sex Factors
  • Sickness Impact Profile
  • Statistics, Nonparametric
  • Surveys and Questionnaires*