Izaguirre Marisa R, Keefer Laurie
*Division of Gastroenterology, Hepatology, and Nutrition, Ann and Robert H. Lurie Children's Hospital of Chicago †Division of Gastroenterology and Hepatology, Northwestern University Feinberg School of Medicine, Chicago, IL.
J Pediatr Gastroenterol Nutr. 2014 Jul;59(1):29-32. doi: 10.1097/MPG.0000000000000357.
Pediatric inflammatory bowel disease (IBD) self-management fits well within a social-cognitive framework. At the heart of social-cognitive theory is self-efficacy, a set of beliefs about one's ability to perform certain tasks. Self-efficacy is a strong predictor of health outcomes in chronic diseases and could serve as an intermediary outcome measure of self-management for pediatric IBD. The aim of this preliminary study was to develop items for the design of a self-efficacy scale specifically for adolescents and young adults with IBD.
Survey development is an iterative process. As defined by the US Food and Drug Administration guidelines for developing a patient-reported outcome measurement, the first step of this process is to obtain patient input. Using qualitative research methods, adolescents and young adults were recruited from an outpatient pediatric gastroenterology clinic to participate in a semistructured interview. Transcriptions of the recorded interviews were reviewed for themes related to self-efficacy around disease management. A consensus panel of gastroenterologists and health psychologists reviewed the initially constructed items. Those specific items were then reviewed and adjusted by a panel of participants for content and understandability using cognitive interview methods. The resulting 13-item scale is presented here.
Nineteen patients and 5 parents participated in the study. The study sample was 42% girls, 79% whites, 74% had Crohn disease, and 79% had not required surgery. Median age was 15 years (range 10-22 years). Theme analysis and expert review yielded 13 items across 4 theoretical domains: managing medical care, managing daily life with IBD, managing emotions, and managing the future with IBD.
A 13-item disease-specific scale has been developed based on patient input to assess self-efficacy around self-management in adolescents with IBD. Efforts to validate this newly designed scale are presently under way.
儿童炎症性肠病（IBD）自我管理非常符合社会认知框架。社会认知理论的核心是自我效能感，即关于个人执行特定任务能力的一组信念。自我效能感是慢性病健康结果的有力预测指标，可作为儿童IBD自我管理的中间结果指标。这项初步研究的目的是为专门针对患有IBD的青少年和青年设计自我效能量表开发条目。
调查开发是一个迭代过程。根据美国食品药品监督管理局制定患者报告结局测量的指南，该过程的第一步是获取患者的意见。采用定性研究方法，从门诊儿科胃肠病诊所招募青少年和青年参与半结构化访谈。对访谈记录进行转录，以审查与疾病管理中的自我效能感相关的主题。由胃肠病学家和健康心理学家组成的共识小组对最初构建的条目进行了审查。然后，由一组参与者使用认知访谈方法对这些特定条目进行内容和可理解性方面的审查和调整。此处展示了最终得出的13个条目的量表。
19名患者和5名家长参与了该研究。研究样本中42%为女孩，79%为白人，74%患有克罗恩病，79%未接受过手术。中位年龄为15岁（范围10 - 22岁）。主题分析和专家审查得出了跨越4个理论领域的13个条目：管理医疗护理、带着IBD管理日常生活、管理情绪以及带着IBD规划未来。
基于患者的意见，已开发出一个包含13个条目的疾病特异性量表，用于评估患有IBD的青少年在自我管理方面的自我效能感。目前正在努力对这个新设计的量表进行验证。
