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Quality of life in paediatric inflammatory bowel disease measured by a generic and a disease‐specific questionnaire
Author(s) -
Loonen HJ,
Grootenhuis MA,
Last BF,
Koopman HM,
Derkx HHF
Publication year - 2002
Publication title -
acta pædiatrica
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.772
H-Index - 115
eISSN - 1651-2227
pISSN - 0803-5253
DOI - 10.1111/j.1651-2227.2002.tb01727.x
Subject(s) - medicine , quality of life (healthcare) , disease , inflammatory bowel disease , population , physical therapy , pediatrics , environmental health , nursing
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.