Division of Gastroenterology, Hepatology and Nutrition, Department of Pediatrics, Faculty of Medicine, British Columbia Children's Hospital, University of British Columbia, Vancouver, British Columbia, Canada; British Columbia Children Hospital Research Institute, Vancouver, British Columbia, Canada.
British Columbia Children Hospital Research Institute, Vancouver, British Columbia, Canada; Department of Cellular and Physiological Sciences, University of British Columbia, Vancouver, British Columbia, Canada.
J Pediatr. 2021 Nov;238:57-65.e2. doi: 10.1016/j.jpeds.2021.07.036. Epub 2021 Jul 19.
To evaluate quality of life (QoL) in a large cohort of pediatric patients with inflammatory bowel disease (IBD) and to identify the clinical factors that influence QoL.
This cross-sectional study analyzes a quality improvement initiative in 351 pediatric patients with IBD in British Columbia, Canada using the self-reported Pediatric Quality of Life Inventory (PedsQL) 4.0 generic scale. The questionnaire was completed at outpatient clinic and biologic infusion appointments. Statistical analysis included the t test, ANOVA, and multilinear regressions to evaluate the relationships between clinical factors and QoL.
Mean (SE) QoL scores (79.95 [0.84]) fell between previously described healthy and chronically ill populations. Disease activity was the most significant predictor of QoL, with patients in remission scoring similar (84.42 [0.87]) to well established healthy norms, and those with moderately or severely active disease having some of the lowest published PedsQL scores (63.13 [3.27]), lower than most other chronic pediatric conditions. Twenty-five patients with moderately or severely active disease at the time of survey completion had follow-up surveys identified 1 year later and had a significant improvement of both their disease activity (P < .005) and their PedsQL scores (follow-up survey mean 76.13 [3.11]). Additional clinical factors independently associated with poor QoL were school nonattendance (15.5% decrease in QoL, P < .001), immune-modulator selection (methotrexate conferring a 9.5% lower mean QoL score than azathioprine, P = .005), and female gender (P = .031).
Pediatric patients with IBD experience a QoL significantly impacted by multiple clinical factors including current severity of IBD symptoms.
评估炎症性肠病（IBD）患儿的生活质量（QoL），并确定影响 QoL 的临床因素。
本横断面研究分析了加拿大不列颠哥伦比亚省 351 名 IBD 儿科患者的一项质量改进计划，使用自我报告的儿科生活质量量表（PedsQL）4.0 通用量表。问卷调查在门诊诊所和生物输注预约时完成。统计分析包括 t 检验、方差分析和多元线性回归，以评估临床因素与 QoL 之间的关系。
平均（SE）QoL 评分（79.95 [0.84]）介于先前描述的健康和慢性疾病人群之间。疾病活动度是 QoL 的最显著预测因素，缓解期患者的评分与既定的健康标准相似（84.42 [0.87]），而中度或重度活动期患者的 PedsQL 评分则处于较低水平（63.13 [3.27]），低于大多数其他慢性儿科疾病。在调查完成时患有中度或重度活动期疾病的 25 名患者在 1 年后有后续调查，他们的疾病活动度（P<.005）和 PedsQL 评分均显著改善（随访调查平均 76.13 [3.11]）。与 QoL 较差独立相关的其他临床因素包括缺课（QoL 降低 15.5%，P<.001）、免疫调节剂选择（与硫唑嘌呤相比，甲氨蝶呤使平均 QoL 评分降低 9.5%，P=.005）和女性性别（P=.031）。
IBD 患儿的 QoL 受到多种临床因素的显著影响，包括当前 IBD 症状的严重程度。
