基于ASE理论的炎症性肠病自我管理分层支持模型构建与实证研究

Inflammatory bowel disease (IBD) is a group of chronic non-specific intestinal inflammatory diseases with unclear etiology and pathogenesis. According to the data of 2012 in China, the incidence of IBD was between 1.40/100,000 and 11.4/100,000, showing an obvious rising trend in recent years. The recurrence rate is high to 50-70%, and the peak age of onset is 18-35 years old. The disease has been listed as one of the modern intractable diseases by WHO. Self-management is a new concept of chronic disease management. Domestic research on IBD self-management is still in its infancy, and only some fragmented and unsystematic reports have been found. Based on the "attitude-social-influence-self-efficacy model" and "chronic disease management hierarchical theory" as the guidance, combined with the data basis of the previous research and the results of literature analysis, the core elements of IBD self-management were determined, and the hierarchical support for IBD patients was defined to include the primary, intermediate and advanced levels of self-management. The relationship between each factor and patients' self-management behavior was established by structural equation model (SEM) analysis, and a hierarchical support model for IBD patients' self-management was constructed. The model was verified by the design study of the asymmetric control group in the applied experiment, and its application effect and mechanism were clarified. It aims to realize the patients' transformation from passive coping to active self-management and active participation in clinical decision-making, and finally achieve the final goal of improving the life quality of IBD patients.

炎症性肠病(IBD)是一组病因和发病机制尚不明确的慢性非特异性肠道炎性疾病。我国2012年数据显示IBD的发病率在1.4/10万～11.4/10万之间，近年呈明显上升趋势；复发率高达50%～70%，发病高峰年龄为18～35岁，疾病迁延难愈，严重影响生活质量。自我管理是慢病管理的新理念，国内IBD自我管理研究仍处于起步阶段，仅见一些碎片化报道。本研究基于“态度-社会影响-自我效能模型”和“慢病管理分层理论”为指导，结合本课题前期研究和文献分析的结果，确定IBD自我管理核心要素，明确IBD患者分层支持即初级、中级、高级自我管理三个等级。采用结构方程模型分析法，建立各因子与患者自我管理行为之间的相互关系，构建IBD患者自我管理分层支持模型。应用类实验不对等对照组设计研究对该模型进行验证，阐明其应用效果和机制规律。实现患者由消极应对向主动自我管理、积极参与决策的转变，以提高生活质量为终期目标。

IBD迁延不愈，反复发作给患者身心健康带来严重的危害及沉重的疾病负担。有效的自我管理对患者具有重要意义，但IBD患者的自我管理现状不容乐观。本项目以“ASE理论”和“自我管理理论”为根基，以“自我管理”概念作为核心，开展了一系列研究。本研究分为四个阶段：第一阶段编制和验证IBD患者自我管理的评估量表，用于衡量IBD患者的自我管理水平。最终形成信效度较好的IBD患者自我管理意向量表。第二阶段构建IBD患者自我管理行为的结构方程模型，深入探索自我管理行为相关影响变量间的路径关系。发现对自我管理行为影响最大的潜变量是自我管理意向，其次是自我管理效能、自我管理态度和自我管理社会影响。第三阶段为IBD分层自我管理信息平台的构建，基于理论与机制、以用户为中心的自我管理需求质性研究、借助文献研究与专家会议法等，构建IBD自我管理方案与信息化自我管理信息平台对接，形成患者端、家属端、医疗端的功能模块，集筛查、分诊、治疗、随访和分层自我管理为一体的疾病管理。第四阶段为IBD分层自我管理信息平台的应用阶段。构建IBD分层自我管理信息平台后将纳入符合条件、知情同意的IBD 患者入组，依据其分层管理标准给予自我管理支持，并根据症状指数可视化疾病活动，让患者积极参与疾病自我管理，形成多层面干预策略。本项目验证了基于ASE理论的IBD患者自我管理行为影响机制的理论模型，丰富了IBD患者自我管理行为的影响机制，为今后IBD患者的管理提供的工具和理论支持，以期为今后的慢病管理研究提供启发。识别IBD患者知识掌握缺口的干预形式，促进信息化医疗和IBD患者“线上+线下”自我管理的全方位提升，为IBD患者自我管理提供多方位的新视角、新思路和实践经验。