Randall Jason A, Guobyte Aiste, Delbecque Laure, Newton Louise, Symonds Tara, Hunter Theresa
Clinical Outcomes Solutions, Unit 68 Basepoint, Shearway Business Park, Shearway Road, Folkestone, Kent, CT19 4RH, UK.
Clinical Outcomes Solutions, Chicago, IL, USA.
J Patient Rep Outcomes. 2020 Sep 7;4(1):75. doi: 10.1186/s41687-020-00238-1.
Ulcerative Colitis (UC) is a chronic gastrointestinal disease that often presents during one's most productive years and is characterized by colon inflammation. Key symptoms and impacts in adults are well-known, however, experiences among pediatric populations have not been well documented. The purpose of this study was to understand the health-related quality of life and symptomatic experience of children (2-11 years) living with UC.
Qualitative, semi-structured face-to-face interviews were conducted. Children aged 5-11 years were interviewed, as well as their parents/caregivers in matched dyads. Parents/caregivers of children aged2-4 years were interviewed within a parent/caregiver-only cohort. All participants were recruited from the United States. Interviews were coded using thematic analysis.
Key symptoms and impacts reflecting the lived experience of UC were identified following thematic analysis, generating a conceptual model. A total of 32 participants (20 parents/caregivers and 12 children) were interviewed. Results identified a substantial burden of UC in children. All children and parents/caregivers reported that they/their child experienced stomach/abdominal pain. Other symptoms discussed by over 75% were blood in stool, diarrhea/loose stools, stool urgency, incomplete evacuation, stool frequency, and feeling gassy/passing gas. The most frequently discussed impacts by over 75% of participants were on emotional and practical aspects, seriously affecting quality of life.
Qualitative analysis of the interviews identified a substantial burden of UC on children, with a profound impact on their lives. The symptomatic experience is reflective of adults and adolescents. A high level of agreement between parents/caregivers and children was demonstrated regarding the perception of the presence or absence of symptoms. Children aged 8-11 years showed higher levels of agreement with parents/caregivers than did younger children, indicating appropriateness of self-report of symptom data in the 8-11 years age group.
溃疡性结肠炎（UC）是一种慢性胃肠道疾病，常在人最具生产力的年龄段出现，其特征为结肠炎症。成人的主要症状和影响已广为人知，然而，儿科人群的经历尚未得到充分记录。本研究的目的是了解患有UC的2至11岁儿童的健康相关生活质量和症状体验。
进行了定性、半结构化的面对面访谈。对5至11岁的儿童及其配对的父母/照顾者进行了访谈。2至4岁儿童的父母/照顾者在仅包含父母/照顾者的队列中接受了访谈。所有参与者均从美国招募。访谈采用主题分析进行编码。
通过主题分析确定了反映UC生活经历的主要症状和影响，生成了一个概念模型。共访谈了32名参与者（20名父母/照顾者和12名儿童）。结果表明儿童患UC的负担很重。所有儿童及其父母/照顾者均报告他们/他们的孩子经历过胃痛/腹痛。超过75%的人讨论的其他症状包括便血、腹泻/稀便、排便紧迫感、排便不净、排便频率以及腹胀/排气。超过75%的参与者最常讨论的影响是在情感和实际方面，严重影响生活质量。
访谈的定性分析确定了UC对儿童的沉重负担，对他们的生活产生了深远影响。症状体验与成人和青少年相似。在症状存在与否的认知方面，父母/照顾者与儿童之间表现出高度一致性。8至11岁的儿童与父母/照顾者的一致性水平高于年幼儿童，表明8至11岁年龄组自我报告症状数据是合适的。
