Quality of life in paediatric inflammatory bowel disease measured by a generic and a disease‐specific questionnaire
2002; Wiley; Volume: 91; Issue: 3 Linguagem: Inglês
10.1111/j.1651-2227.2002.tb01727.x
ISSN1651-2227
AutoresHester J. van der Zaag–Loonen, MA Grootenhuis, BF Last, HM Koopman, H. H. F. Derkx,
Tópico(s)Inflammatory Bowel Disease
ResumoThis 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.
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