Faculdade de Medicina da Universidade de São Paulo, Gastroenterologia Pediátrica, São Paulo, SP, Brasil.
Hospital das Clínicas da Faculdade de Medicina da Universidade de São Paulo, Disciplina de Coloproctologia, São Paulo, SP, Brasil.
Arq Gastroenterol. 2021 Oct-Dec;58(4):541-547. doi: 10.1590/S0004-2803.202100000-96.
Inflammatory bowel diseases (IBD), comprising Crohn's disease and ulcerative colitis, are chronic inflammatory diseases of the gastrointestinal tract that often have their onset among adolescents and young adults (AYA). IBD are characterized by episodes of active disease interspersed with periods of remission, and its activity is inversely correlated with health-related quality of life (HRQL).
This study aimed to determine whether AYA in remission or with low IBD activity would exhibit HRQL similar to that of age-matched healthy individuals, and whether demographic and disease factors could affect HRQL using a 'patient-reported outcome' instrument.
This study enrolled only AYA with IBD, with low activity. This research included five multidisciplinary clinics of two academic hospitals: Paediatric Gastroenterology, Gastroenterology, Coloproctology, Paediatric Rheumatology and Adolescent divisions, São Paulo, Brazil. A total of 59 AYA with IBD (age, 13-25 years) and 60 healthy AYA (age, 13-25 years) completed the Pediatric Quality of Life Inventory 4.0 and 36-Item Short-Form Health Survey questionnaires and the visual analogue scale (VAS) for pain. Demographic data, extra-intestinal manifestations, treatment, and outcomes regarding CD and UC were evaluated.
AYA with IBD and healthy controls were similar with respect to median ages (18.63 [13.14-25.80] years vs 20.5 [13.68-25.84] years, P=0.598), proportion of female sex (42% vs 38%, P=0.654), and percentage of upper middle/middle Brazilian socioeconomic classes (94% vs 97%, P=0.596). The school/work score was significantly lower in AYA with IBD than in healthy controls (70 [10-100] vs 75 [5-100], P=0.037). The 'general health-perception' score was significantly lower in AYA with IBD than in healthy controls (50 [10-80] vs 0 [25-90], P=0.0002). The median VAS, FACES pain rating scale, and total VAS scores were similar between the two groups (2 [0-10] vs 3 [0-9], P=0.214). No association between HRQL and clinical and demographic parameters was identified among IBD patients.
AYA with low IBD activity reported poor HRQL in school/work and general health perception domains, which highlights a disability criterion in this vulnerable population.
炎症性肠病（IBD）包括克罗恩病和溃疡性结肠炎，是一种胃肠道的慢性炎症性疾病，常在青少年和年轻成人（AYA）中发病。IBD 的特征是疾病活动期与缓解期交替出现，其活动度与健康相关生活质量（HRQL）呈负相关。
本研究旨在确定处于缓解期或疾病活动度较低的 AYA 是否表现出与年龄匹配的健康个体相似的 HRQL，以及使用“患者报告的结果”工具，是否可以确定人口统计学和疾病因素是否会影响 HRQL。
本研究仅纳入低活动度 IBD 的 AYA。该研究纳入了巴西圣保罗两家学术医院的五个多学科诊所：儿科胃肠病学、胃肠病学、肛肠病学、儿科风湿病学和青少年科。共有 59 名 IBD 的 AYA（年龄 13-25 岁）和 60 名健康的 AYA（年龄 13-25 岁）完成了儿童生活质量问卷 4.0 和 36 项简短健康调查量表以及视觉模拟评分（VAS）评估疼痛。评估了与 CD 和 UC 相关的人口统计学数据、肠外表现、治疗和结局。
IBD 的 AYA 与健康对照组在中位年龄（18.63 [13.14-25.80] 岁 vs 20.5 [13.68-25.84] 岁，P=0.598）、女性比例（42% vs 38%，P=0.654）和中上/中产阶级巴西社会经济阶层比例（94% vs 97%，P=0.596）方面相似。IBD 的 AYA 在校/工作方面的评分明显低于健康对照组（70 [10-100] vs 75 [5-100]，P=0.037）。IBD 的 AYA 在一般健康感知方面的评分明显低于健康对照组（50 [10-80] vs 0 [25-90]，P=0.0002）。两组的 VAS 中位数、FACES 疼痛评分量表和总 VAS 评分相似（2 [0-10] vs 3 [0-9]，P=0.214）。在 IBD 患者中，未发现 HRQL 与临床和人口统计学参数之间存在任何关联。
处于低疾病活动度的 AYA 在在校/工作和一般健康感知方面报告 HRQL 较差，这突出了这一脆弱人群的残疾标准。
