The Burden of Inflammatory Bowel Disease: A Patient-reported Qualitative Analysis and Development of a Conceptual Model
The Burden of Inflammatory Bowel Disease: A Patient-reported Qualitative Analysis and Development of a Conceptual Model
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DOI：
10.1097/01.mib.0000440983.86659.81
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发表时间：
2014-03-01
影响因子：
4.9
通讯作者：
Moss, Alan C.
中科院分区：
文献类型：
--
作者：
Devlen, Jennifer;Beusterien, Kathleen;Moss, Alan C.
背景：本研究的目的是从患者的角度描述炎症性肠病（IBD）的影响，并为概念模型的发展提供信息。方法：对成年IBD患者进行焦点小组和一对一访谈。在定性数据软件MaxQDA的协助下，对焦点小组和访谈的记录进行分析，以确定主题和主题之间的联系。定性研究的主题补充了文献中报道的主题和ibd特定患者报告的结果测量中包含的概念。结果：27例患者参与。主要的身体症状包括疼痛、肠道相关症状，如尿频、尿急、大小便失禁、腹泻、排血，以及全身症状，如体重减轻和疲劳。参与者描述了持续的和可变的症状经历。IBD症状会立即扰乱活动，但也会对日常活动产生持续影响，包括饮食限制、生活方式改变和保持靠近厕所。更远的影响包括对工作、学业、养育子女、社交和休闲活动、人际关系和心理健康的干扰。直肠用药、冷藏生物制剂和药物补充带来的不便在现有的患者报告的结果测量中未被确定为新的负担。结论：IBD症状会立即导致活动中断，但患者可能会持续经历一些慢性症状。这里提出的概念模型可能有助于确定IBD未来研究中测量的目标概念。
Background:The aim of this study was to describe the impacts of inflammatory bowel disease (IBD) from the patients' perspective and to inform the development of a conceptual model.Methods:Focus groups and one-on-one interviews were undertaken in adult patients with IBD. Transcripts from the focus groups and interviews were analyzed to identify themes and links between themes, assisted by qualitative data software MaxQDA. Themes from the qualitative research were supplemented with those reported in the literature and concepts included in IBD-specific patient-reported outcome measures.Results:Twenty-seven patients participated. Key physical symptoms included pain, bowel-related symptoms such as frequency, urgency, incontinence, diarrhea, passing blood, and systemic symptoms such as weight loss and fatigue. Participants described continuing and variable symptom experiences. IBD symptoms caused immediate disruption of activities but also had ongoing impacts on daily activities, including dietary restrictions, lifestyle changes, and maintaining close proximity to a toilet. More distal impacts included interference with work, school, parenting, social and leisure activities, relationships, and psychological well-being. The inconvenience of rectal medications, refrigerated biologics, and medication refills emerged as novel burdens not identified in existing patient-reported outcome measures.Conclusions:IBD symptoms cause immediate disruption in activities, but patients may continue to experience some symptoms on a chronic basis. The conceptual model presented here may be useful for identifying target concepts for measurement in future studies in IBD.