Objective Children with very early-onset inflammatory bowel disease (VEO-IBD) represent a distinct group of patients with IBD with unique phenotypic and genetic characteristics; however, they are frequently omitted from psychosocial research. This study used a novel, brief measure of pediatric global health to assess (1) overall health-related quality of life (HRQOL) in children with VEO-IBD, (2) HRQOL compared to healthy children, and (3) whether gastrointestinal symptoms account for the differences in HRQOL between these groups. Methods Caregivers of 51 children with VEO-IBD (Mage = 4.26 years, 75% male) and 54 healthy children (Mage = 3.50 years, 54% male) completed the PROMIS Pediatric Global Health Scale (PGH-7) parent-proxy form to assess HRQOL and a questionnaire assessing gastrointestinal symptoms. Descriptive statistics, analysis of variance with covariates (ANCOVA), and meditation analyses with bootstrapping were conducted. Results Caregivers of children with VEO-IBD rated their HRQOL as relatively positive, although children with greater disease yielded lower ratings on some PGH-7 items (e.g., fun with friends, physical health, sadness). Compared to healthy youth, children with VEO-IBD scored lower on the PGH-7, with significantly lower item-level scores on overall health, physical health, mental health, and quality of life. Gastrointestinal symptoms mediated the association between health status (i.e., VEO-IBD vs. healthy) and HRQOL, αβ = −2.84, 95% CI = −5.70, −0.34. Conclusions While some children with VEO-IBD are at risk for deficits in HRQOL, many are quite resilient. Psychosocial screening is necessary for providing appropriate referrals to behavioral health services and learning more about psychosocial adjustment in children with VEO-IBD.

中文翻译：

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极早发性炎症性肠病儿童的儿科全球健康

目的 极早发性炎症性肠病（VEO-IBD）儿童代表了一组具有独特表型和遗传特征的 IBD 患者；然而，它们经常被社会心理学研究忽略。本研究使用一种新颖、简短的儿科全球健康测量方法来评估 (1) VEO-IBD 儿童的整体健康相关生活质量 (HRQOL)，(2) 与健康儿童相比的 HRQOL，以及 (3) 是否有胃肠道症状解释这些组之间 HRQOL 的差异。方法 51 名 VEO-IBD 儿童（Mage = 4.26 岁，75% 男性）和 54 名健康儿童（Mage = 3.50 岁，54% 男性）的看护人填写了 PROMIS 儿科全球健康量表 (PGH-7) 家长代理表，以评估 HRQOL 和评估胃肠道症状的问卷。描述性统计，进行了协变量方差分析（ANCOVA）和自举冥想分析。结果 VEO-IBD 儿童的看护人将他们的 HRQOL 评为相对积极，尽管病情较重的儿童在某些 PGH-7 项目（例如，与朋友的乐趣、身体健康、悲伤）上的评分较低。与健康青年相比，患有 VEO-IBD 的儿童在 PGH-7 上得分较低，在整体健康、身体健康、心理健康和生活质量方面的项目级得分明显较低。胃肠道症状介导了健康状况（即 VEO-IBD 与健康）和 HRQOL 之间的关联，αβ = -2.84, 95% CI = -5.70, -0.34。结论 虽然一些患有 VEO-IBD 的儿童存在 HRQOL 缺陷的风险，但许多儿童具有相当的弹性。