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Coping is excellent in Swiss Children with inflammatory bowel disease: results from the Swiss IBD cohort study
Daniela Rogler1, Nicolas Fournier2, Valérie Pittet2
1Division of Gastroenterology and Nutrition, University Children's Hospital, Zurich, Switzerland; Department of Child and Adolescent Psychiatry, University of Zurich, Zurich, Switzerland.
Insights
Children with inflammatory bowel disease (IBD) experience moderate physical well-being impairment but show excellent social support and better mental well-being compared to controls. Effective coping strategies may mitigate disease burden.
Area of Science:
- Pediatric Gastroenterology
- Quality of Life Research
- Child Psychology
Background:
- Childhood-onset inflammatory bowel disease (IBD) is presumed to negatively impact children's quality of life (QoL).
- Assessing health-related quality of life (HRQOL) is crucial for understanding personality development in affected children.
- A Swiss nationwide cohort study investigated HRQOL in pediatric IBD patients.
Purpose of the Study:
- To assess the health-related quality of life (HRQOL) in children with inflammatory bowel disease (IBD).
- To identify specific areas of impairment and well-being in pediatric IBD patients.
- To compare HRQOL outcomes in IBD patients with established reference values from healthy controls.
Main Methods:
- Prospective data collection from pediatric patients in the Swiss IBD Cohort Study.
- Evaluation of IBD activity using Pediatric Crohn's Disease Activity Index (PCDAI) and Pediatric Ulcerative Colitis Activity Index (PUCAI).
- Assessment of HRQOL using the age-adapted KIDSCREEN questionnaire in 110 children (64 Crohn's disease, 46 ulcerative colitis).
Main Results:
- Moderate impairment was observed in physical well-being, linked to disease activity.
- Mental well-being and social support were notably better than in healthy controls.
- Autonomy and school-related variables were significantly higher in IBD patients compared to controls.
- Geographic subgroup analysis indicated these positive findings were primarily in German-speaking Switzerland.
Conclusions:
- Children with IBD in this cohort exhibit excellent social support.
- Physical well-being is the primary area affected by disease activity, while other aspects of HRQOL are enhanced.
- Effective coping mechanisms and support systems appear to successfully compensate for the challenges of pediatric IBD.
Background:
Inflammatory bowel disease (IBD) starting during childhood has been assumed to impair quality of life (QoL) of affected children. As this aspect is crucial for further personality development, the health-related quality of life (HRQOL) was assessed in a Swiss nationwide cohort to obtain detailed information on the fields of impairment.
Methods:
Data were prospectively acquired from pediatric patients included in the Swiss IBD Cohort Study. IBD activity was evaluated by PCDAI and PUCAI. The age adapted KIDSCREEN questionnaire was evaluated for 110 children with IBD (64 with Crohn's disease 46 with ulcerative colitis). Data were analyzed with respect to established reference values of healthy controls.
Results:
In the KIDSCREEN index a moderate impairment was only found for physical wellbeing due to disease activity. In contrast, mental well-being and social support were even better as compared to control values. A subgroup analysis revealed that this observation was restricted to the children in the German speaking part of Switzerland, whereas there was no difference compared to controls in the French part of Switzerland. Furthermore, autonomy and school variables were significantly higher in the IBD patients as compared to controls.
Conclusions:
The social support for children with IBD is excellent in this cohort. Only physical well-being was impaired due to disease activity, whereas all other KIDSCREEN parameters were better as compared to controls. This indicates that effective coping and support strategies may be able to compensate the burden of disease in pediatric IBD patients.
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