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The child’s perception on monitoring inflammatory bowel disease activity
European Journal of Pediatrics ( IF 3.0 ) Pub Date : 2021-11-10 , DOI: 10.1007/s00431-021-04315-5
Elsa A van Wassenaer 1, 2 , Renée R van der Klift 1 , Mira S Staphorst 3 , Johanna H van der Lee 4, 5 , Marc A Benninga 1 , Bart G P Koot 1
Affiliation  

To determine the perception of children with inflammatory bowel disease (IBD) regarding monitoring tests, we first compared the reported discomfort and patient perspective during gastro-intestinal (GI)-endoscopy, magnetic resonance entrography (MRE), and ultrasound (US) and, in a second comparison, patient preference on non-invasive tests (venipuncture, sampling stool and US). A cross-sectional study in children 8–18 years undergoing an US, MRE, and GI-endoscopy for diagnosis or follow-up of IBD. After each procedure, the children filled out the Discomfort during research procedures questionnaire (DISCO-RC). Items of the DISCO-RC are as follows: nervousness, annoyance, pain, fright, boredom, and tiredness. Answers range from “not” (= 0 points) to “extremely” (= 4 points) (range total score: 0–24). Differences between the procedures were assessed with Friedman test, with subsequent Wilcoxon signed-rank test. The children were also asked which non-invasive test they preferred not to undergo regularly (venipuncture, stool-sampling, or US). Answers were analyzed with χ2-test. Forty-nine patients (27 (55%) female, median age 15 (range 9–17)) were included. The children reported to be most nervous, frightened, and tired after GI-endoscopy (median: 1, 1, 2 points, respectively), equally annoyed by MRE and GI-endoscopy (median 1 point), and equally bored by MRE and US. GI-endoscopy was ranked as most discomfortable, followed by MRE and US (total DISCO-RC scores: 7 vs. 5 vs. 2, p < 0.001). Most of the children preferred not to sample stool or perform venipuncture regularly (n = 20 (41%, both) (p < 0.001)).

Conclusion: Our results suggest that the children with IBD report low discomfort after US, MRE, and GI-endoscopy. US is preferred as a monitoring tool, also among non-invasive monitoring tests. GI-endoscopy was most discomfortable.

What is Known:
• Children with inflammatory bowel disease need to be monitored frequently for disease activity.
• Adult studies — including a systematic review — on acceptability of monitoring tools among IBD patients showed mixed results.
What is New:
• Children in our study ranked gastro-intestinal endoscopy as most discomfortable, followed by MRE and US.
• With regard to non-invasive monitoring, most children preferred not to sample stool or perform venipuncture regularly, and preferred US.


中文翻译:

儿童对监测炎症性肠病活动的认知

为了确定炎症性肠病 (IBD) 儿童对监测测试的看法,我们首先比较了胃肠道 (GI) 内窥镜检查、磁共振内窥镜 (MRE) 和超声 (US) 期间报告的不适和患者观点,并且,在第二个比较中,患者对非侵入性测试(静脉穿刺、粪便取样和超声)的偏好。一项针对 8-18 岁儿童接受 US、MRE 和 GI 内窥镜检查诊断或随访 IBD 的横断面研究。在每个程序之后,孩子们填写了研究程序期间的不适问卷 (DISCO-RC)。DISCO-RC 的项目如下:紧张、烦恼、疼痛、恐惧、无聊和疲倦。答案范围从“不”(= 0 分)到“非常”(= 4 分)(范围总分:0-24)。使用弗里德曼检验评估程序之间的差异,随后进行威尔科克森符号秩检验。孩子们还被问及他们更愿意不定期接受哪种非侵入性检查(静脉穿刺、粪便取样或美国)。答案被分析了χ 2 -检验。包括 49 名患者(27 名(55%)女性,中位年龄 15 岁(范围 9-17 岁))。GI 内窥镜检查后儿童报告最紧张、害怕和疲倦(中位数分别为 1、1、2 分),MRE 和 GI 内窥镜检查同样烦躁(中位数 1 分),MRE 和 US 同样无聊. 胃肠道内窥镜检查被列为最不适,其次是 MRE 和 US(总 DISCO-RC 评分:7 vs. 5 vs. 2,p  < 0.001)。大多数儿童不喜欢定期采样粪便或进行静脉穿刺(n  = 20(41%,两者)(p  < 0.001))。

结论:我们的结果表明,IBD 儿童在 US、MRE 和 GI 内窥镜检查后报告的不适感较低。US 是首选的监测工具,在非侵入性监测测试中也是如此。胃肠道内窥镜检查是最不舒服的。

已知情况:
• 需要经常监测患有炎症性肠病的儿童的疾病活动。
• 关于IBD 患者监测工具可接受性的成人研究——包括系统评价——显示出不同的结果。
最新消息:
• 我们研究中的儿童将胃肠内窥镜检查列为最不适,其次是 MRE 和 US。
• 在无创监测方面,大多数儿童不喜欢定期抽取粪便样本或进行静脉穿刺,而更喜欢美国。
更新日期:2021-11-10
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