Smyth Matthew, Jacobson Kevan
Department of Pediatrics, Division of Gastroenterology, Hepatology and Nutrition, Faculty of Medicine, British Columbia Children's Hospital, University of British Columbia, British Columbia, Canada.
British Columbia Children Hospital Research Institute, Vancouver, British Columbia, Canada.
Data Brief. 2021 Nov 24;39:107599. doi: 10.1016/j.dib.2021.107599. eCollection 2021 Dec.
The Pediatric Quality of Life Inventory Version 4.0 Short Form Generic Core Scale (PedsQL) is a validated and widely used tool assessing the quality of life (QoL) of children and youth. It has been used extensively across healthy populations as well as those with chronic and acute illnesses, allowing for comparison of the psychosocial impact of chronic illness between pediatric disease cohorts. As part of the QoL initiative undertaken at the British Columbia Children's Hospital (BCCH) Inflammatory Bowel Disease (IBD) program and published in the Journal of Pediatrics titled "Cross-Sectional Analysis of Quality of Life in Pediatric Patients with IBD in British Columbia, Canada," a limited literature review was conducted using Embasse and Ovid. Studies using the English version of the PedsQL short form generic scale (not a disease specific scale) were identified. Studies with populations greater than 50 patients with robust subgroup sample size were included, with an emphasis on studies with well-defined patients with chronic disease. These data were compared to the BCCH population, as discussed in the aforementioned journal article. Analysis within the BCCH cohort is described separately. Comparison between different populations from the existing literature was qualitative only, with no statistical analysis done given the heterogeneity of populations and studies. In a study of patients from the emergency department at BCCH (178), the mean (SD) QoL scores of the healthy patients was 89.2 (10.3). In a group of self-identified healthy patients in California (5079), their mean QoL score was 83.9 (12.5). Separating the BCCH IBD population by disease activity, those in remission (220, 84.4 (12.8)) have similar QoL scores to these healthy cohorts, though their scores remain slightly below the previously published BCCH cohort. For children with any degree of active IBD (98, 75.6 (15.8)), their QoL scores are below the healthy means and are lower than other groups with self-identified "chronic illnesses" (367, 77.2 (15.5)), diabetes (418, 82.3 (13.5)), mild asthma (281, 85.5 (13.3)), or Canadian patients 4 weeks post-concussion (1157, 80.3). BCCH IBD patients with moderately to severely active disease have QoL scores well below the other disease groups (33, 63.1 (18.8)); lower than oncology patients on induction chemotherapy regimens (105, 68.9 (16.0)), acute inpatients (359, 63.9 (20.3)), and asthmatics with moderate-severe, persistent asthma (86, 67.1 (18.6)). This data is useful for clinicians treating pediatric patients looking at how QoL is influenced by chronic illness and by factors such as disease type and severity.
儿童生活质量量表4.0简版通用核心量表（PedsQL）是一种经过验证且广泛使用的工具，用于评估儿童和青少年的生活质量（QoL）。它已在健康人群以及患有慢性和急性疾病的人群中广泛使用，有助于比较儿科疾病队列中慢性病对心理社会的影响。作为不列颠哥伦比亚省儿童医院（BCCH）炎症性肠病（IBD）项目开展的生活质量倡议的一部分，并发表在《儿科学杂志》上题为“加拿大不列颠哥伦比亚省儿科IBD患者生活质量的横断面分析”的文章中，使用Embasse和Ovid进行了有限的文献综述。确定了使用PedsQL简版通用量表（而非疾病特异性量表）英文版本的研究。纳入了患者人数超过50且亚组样本量充足的研究，重点是患有明确慢性病的患者的研究。如上述期刊文章中所讨论的，将这些数据与BCCH人群进行了比较。BCCH队列中的分析将单独描述。鉴于人群和研究的异质性，现有文献中不同人群之间的比较仅为定性，未进行统计分析。在一项对BCCH急诊科患者（178例）的研究中，健康患者的平均（标准差）生活质量得分是89.2（10.3）。在加利福尼亚州一组自我认定为健康的患者（5079例）中，他们的平均生活质量得分是83.9（12.5）。按疾病活动度对BCCH的IBD人群进行分类，处于缓解期的患者（220例，84.4（12.8））的生活质量得分与这些健康队列相似，尽管他们的得分仍略低于先前公布的BCCH队列。对于任何程度的活动性IBD患儿（98例，75.6（15.8）），他们的生活质量得分低于健康人群的平均水平，且低于其他自我认定为“慢性病”的人群（367例，77.2（15.5））、糖尿病患者（418例，82.3（13.5））、轻度哮喘患者（281例，85.5（13.3））或加拿大脑震荡后4周的患者（1157例，80.3）。BCCH中患有中度至重度活动性疾病的IBD患者的生活质量得分远低于其他疾病组（33例，63.1（18.8））；低于接受诱导化疗方案的肿瘤患者（105例，68.9（16.0））、急性住院患者（359例，63.9（20.3））以及患有中度至重度持续性哮喘的哮喘患者（86例，67.1（18.6））。这些数据对于治疗儿科患者的临床医生了解慢性病以及疾病类型和严重程度等因素如何影响生活质量很有用。
