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Quality of life in paediatric inflammatory bowel disease measured by a generic and a disease-specific questionnaire
H J Loonen1, M A Grootenhuis, B F Last
1Department of Paediatrics, Emma Children's Hospital, AMC, Amsterdam, The Netherlands.
Insights
Adolescents with inflammatory bowel disease (IBD) experience significantly impaired health-related quality of life (HRQoL). Disease-specific tools like Impact-II are recommended for clinical assessment.
Area of Science:
- Pediatric Gastroenterology
- Quality of Life Research
- Chronic Disease Management
Background:
- Inflammatory Bowel Disease (IBD) significantly impacts pediatric patients.
- Assessing health-related quality of life (HRQoL) is crucial for understanding the comprehensive impact of IBD.
- Existing generic HRQoL measures may not fully capture the disease-specific challenges faced by young IBD patients.
Purpose of the Study:
- To evaluate the health-related quality of life (HRQoL) in children and adolescents with IBD.
- To compare HRQoL using both generic and disease-specific instruments.
- To assess the utility of the Impact-II questionnaire in differentiating disease activity levels.
Main Methods:
- A cross-sectional study involving 83 pediatric patients (8-18 years) with IBD.
- Administered the TNO-AZL Children's Quality of Life (TACQOL) questionnaire (generic) and the Impact-II (NL) questionnaire (disease-specific).
- Measured disease activity using a five-item symptom card.
Main Results:
- Younger children (8-12 years) with IBD showed comparable HRQoL to a reference population on most generic domains, with better cognitive functioning.
- Adolescent patients (older than 12 years) with IBD reported significantly impaired HRQoL in four domains: body complaints, motor functioning, autonomy, and negative emotions.
- The Impact-II effectively discriminated between different disease activity states across all measured domains.
Conclusions:
- Adolescents with IBD face a severely affected HRQoL, with motor functioning and autonomy impairments posing challenges to independence.
- A high prevalence of negative emotions in adolescent IBD patients increases their risk for depressive and behavioral disorders.
- The Impact-II is recommended for clinical use due to its strong discriminative validity in assessing HRQoL in pediatric IBD patients.
Unlabelled:
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.
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