Division of Gastroenterology and Nutrition, University Children's Hospital, Zurich, Switzerland; Department of Child and Adolescent Psychiatry, University of Zurich, Zurich, Switzerland.
Institute of Social and Preventive Medicine, Centre Hospitalier Universitaire Vaudois and University of Lausanne, Lausanne, Switzerland.
J Crohns Colitis. 2014 May;8(5):409-20. doi: 10.1016/j.crohns.2013.10.004. Epub 2013 Nov 12.
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.
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.
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.
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.
儿童时期发病的炎症性肠病（IBD）被认为会损害受影响儿童的生活质量（QoL）。由于这一方面对进一步的个性发展至关重要，因此在瑞士全国性队列中评估了与健康相关的生活质量（HRQOL），以获取有关受损领域的详细信息。
数据是从瑞士 IBD 队列研究中纳入的儿科患者中前瞻性获得的。通过 PCDAI 和 PUCAI 评估 IBD 活动。对 110 名 IBD 患儿（64 名克罗恩病患儿，46 名溃疡性结肠炎患儿）进行了年龄适应的 KIDSCREEN 问卷评估。对数据进行了分析，以与健康对照组的既定参考值进行比较。
在 KIDSCREEN 指数中，仅由于疾病活动而发现身体幸福感中度受损。相比之下，心理健康和社会支持甚至优于对照值。亚组分析表明，这种观察仅局限于瑞士德语区的儿童，而在瑞士法语区与对照组无差异。此外，在 IBD 患者中，自主性和学校变量明显高于对照组。
在该队列中，IBD 患儿的社会支持非常出色。仅因疾病活动而导致身体幸福感受损，而其他所有 KIDSCREEN 参数均优于对照组。这表明有效的应对和支持策略可能能够弥补小儿 IBD 患者的疾病负担。
