Quality of Life Research

, Volume 11, Issue 1, pp 47-56

First online:

Measuring quality of life in children with inflammatory bowel disease: The Impact-II (NL)

  • H.J. LoonenAffiliated withDepartment of Pediatric Gastroenterology, Emma Children's Hospital
  • , M.A. GrootenhuisAffiliated withPsychosocial Department, University of Amsterdam
  • , B.F. LastAffiliated withPsychosocial Department, University of Amsterdam
  • , R.J. de HaanAffiliated withDepartment of Clinical Epidemiology and Biostatistics, Academic Medical Center, University of Amsterdam
  • , J. BouquetAffiliated withSophia Children's Hospital, Erasmus University
  • , B.H.F. DerkxAffiliated withDepartment of Pediatric Gastroenterology, Emma Children's Hospital Email author 

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Inflammatory bowel disease (IBD) is a chronic debilitating disorder. Measures of quality of life are only available for adult patient populations. We developed a new disease-specific health-related quality of life instrument in Dutch for pediatric patients with IBD, called Impact-II (NL). We translated and strongly modified the original (Canadian) Impact questionnaire. It comprises 35 items in six domains. Eighty-three children (66%rpar; completed the questionnaire, 39 children were assessed twice. Disease symptoms were recorded and disease course severity assessed through chart review. Summated disease activity scores and disease course severity scores were dichotomized into two categories. Reliability coefficients were good for five out of six domains (Cronbach's α ranged from 0.57 to 0.86) and measures of test–retest stability in clinically stable patients were good for all domains (intra-class correlation coefficients ranged from 0.67 to 0.91). The instrument showed good discriminant validity between symptom groups and disease course severity on all domains. Convergent validity with a validated generic instrument [TNO-AZL Children's Quality of life questionnaire (Tacqol)] showed satisfactory coefficients. In conclusion, the developed questionnaire shows good psychometric properties. Test–retest stability and responsiveness to change should be further assessed in larger patient samples. Cross-cultural translation and validation procedures into other languages are being conducted to enable international use of Impact-II.

Children Health-related quality of life Inflammatory bowel disease Quality of life instruments Validation