溃疡性结肠炎患者教育临床实践专家共识

doi:10.3877/cma.j.issn.2095-2015.2026.05.001

溃疡性结肠炎（UC）是一种病因未明、病程迁延反复的慢性非特异性肠道炎性疾病，其长期管理高度依赖患者对疾病的认知水平、治疗依从性和自我管理能力。系统的患者教育作为UC综合管理的重要组成部分，其重要性不亚于药物治疗。为规范和优化我国UC患者教育工作，本共识组织消化内科及炎症性肠病（IBD）领域相关专家，在复习国内外最新循证医学证据的基础上，结合我国临床实践，形成了涵盖4个部分、共15条推荐陈述的UC患者教育共识。第一部分为疾病认知教育，涉及建立正确疾病观念、理解诊断流程的复杂性、选择固定诊疗团队、个体化药物治疗及辨别非科学疗法；第二部分为治疗管理教育，涵盖疾病自我监测、功能性肠道症状识别、"达标治疗"理念普及和定期复诊；第三部分为生活方式指导，包括个体化营养管理和分阶段运动干预；第四部分为特殊人群管理，涉及育龄期女性妊娠管理、肠外表现识别、长病程患者的结直肠癌监测以及心理健康评估与干预。本共识旨在帮助UC患者建立正确的疾病观念，提高治疗依从性和自我管理能力，实现疾病的长期稳定控制，最终改善患者的生活质量和远期预后。

关键词: 溃疡性结肠炎, 炎症性肠病, 患者教育, 自我管理, 达标治疗, 黏膜愈合

Ulcerative colitis (UC) is a chronic, non-specific inflammatory bowel disease of unknown etiology, characterized by a relapsing and remitting course. Long-term management of UC depends heavily on patients' disease knowledge, treatment adherence, and self-management capabilities. As an essential component of comprehensive UC management, systematic patient education is of no less importance than pharmacological therapy. To standardize and optimize patient education for UC in China, this consensus was developed by experts in gastroenterology and inflammatory bowel disease (IBD). Based on a review of the latest evidence-based medical literature combined with Chinese clinical practice, the consensus comprises 15 recommendation statements across four parts. Part Ⅰ addresses disease cognition education, including establishing correct disease perceptions, understanding the complexity of the diagnostic process, maintaining continuity of care with a fixed IBD team, individualized pharmacotherapy, and discernment of non-evidence-based therapies. Part Ⅱ covers treatment management education, encompassing disease self-monitoring skills, recognition of functional bowel symptoms during remission, promotion of the "Treat-to-Target" concept, and regular follow-up. Part Ⅲ provides lifestyle guidance, including individualized nutritional management and stage-specific exercise interventions. Part Ⅳ focuses on special population management, addressing pregnancy planning in women of childbearing age, recognition of extraintestinal manifestations, surveillance colonoscopy for colorectal neoplasia in long-standing UC, and psychological assessment and intervention. This consensus aims to help UC patients develop accurate disease perceptions, enhance treatment adherence and self-management abilities, achieve long-term stable disease control, and ultimately improve quality of life and long-term prognosis.

Key words: Ulcerative colitis, Inflammatory bowel disease, Patient education, Self-management, Treat-to-target, Mucosal healing

表1 《溃疡性结肠炎患者教育临床实践专家共识》概要

第一部分　疾病认知教育
推荐陈述1	推荐向所有溃疡性结肠炎患者提供系统性疾病认知教育，以建立正确的疾病观念，减轻心理负担，提升患者长期随访的依从性	强推荐，证据等级：低
推荐陈述2	推荐向患者详细解释溃疡性结肠炎诊断流程的复杂性和必要性，提升医疗配合度	强推荐，证据等级：低
推荐陈述3	建议患者选择相对固定的消化科或炎症性肠病专病医生及诊疗团队，实现疾病的连续性管理和个体化诊疗	强推荐，证据等级：低
推荐陈述4	推荐对患者进行个体化药物治疗教育，确保用药安全性和有效性	强推荐，证据等级：高
推荐陈述5	推荐向患者强调坚持正规治疗的重要性，提高对非科学疗法的辨别能力	强推荐，证据等级：低
第二部分　治疗管理教育
推荐陈述6	建议患者掌握简单实用的疾病自我监测技能，实现病情变化的早期识别和及时干预	强推荐，证据等级：高
推荐陈述7	推荐教育患者识别疾病缓解期可能出现的功能性肠道症状，避免过度恐慌和不必要的治疗升级	强推荐，证据等级：高
推荐陈述8	推荐宣教"达标治疗"理念，强调临床症状的缓解不是治疗的终点，实现内镜下黏膜愈合能有效地降低疾病的复发	强推荐，证据等级：高
推荐陈述9	建议患者按计划定期复诊，通过持续监测和及时调整实现疾病的长期稳定控制	强推荐，证据等级：低
第三部分　生活方式指导
推荐陈述10	推荐对患者进行个体化营养管理教育，强调均衡营养而非过度限制	强推荐，证据等级：高
推荐陈述11	建议患者适当地参与运动，根据病情阶段选择合适的运动方式	强推荐，证据等级：高
第四部分　特殊人群管理
推荐陈述12	建议育龄期女性患者在疾病缓解期内计划怀孕，并通过合适的药物治疗在整个孕期维持疾病缓解状态	强推荐，证据等级：高
推荐陈述13	建议患者认识并重视溃疡性结肠炎的肠外表现，出现相关症状时及时向医生反映，以便调整治疗方案	强推荐，证据等级：低
推荐陈述14	建议长病程的溃疡性结肠炎患者按照医生建议定期行结肠镜检查，以监测溃疡性结肠炎相关瘤变的发生	强推荐，证据等级：高
推荐陈述15	建议存在焦虑、抑郁等不良情绪的患者主动接受心理评估，接受心理医生或精神科医生的正规治疗	强推荐，证据等级：高

表1 《溃疡性结肠炎患者教育临床实践专家共识》概要

第一部分　疾病认知教育
推荐陈述1	推荐向所有溃疡性结肠炎患者提供系统性疾病认知教育，以建立正确的疾病观念，减轻心理负担，提升患者长期随访的依从性	强推荐，证据等级：低
推荐陈述2	推荐向患者详细解释溃疡性结肠炎诊断流程的复杂性和必要性，提升医疗配合度	强推荐，证据等级：低
推荐陈述3	建议患者选择相对固定的消化科或炎症性肠病专病医生及诊疗团队，实现疾病的连续性管理和个体化诊疗	强推荐，证据等级：低
推荐陈述4	推荐对患者进行个体化药物治疗教育，确保用药安全性和有效性	强推荐，证据等级：高
推荐陈述5	推荐向患者强调坚持正规治疗的重要性，提高对非科学疗法的辨别能力	强推荐，证据等级：低
第二部分　治疗管理教育
推荐陈述6	建议患者掌握简单实用的疾病自我监测技能，实现病情变化的早期识别和及时干预	强推荐，证据等级：高
推荐陈述7	推荐教育患者识别疾病缓解期可能出现的功能性肠道症状，避免过度恐慌和不必要的治疗升级	强推荐，证据等级：高
推荐陈述8	推荐宣教"达标治疗"理念，强调临床症状的缓解不是治疗的终点，实现内镜下黏膜愈合能有效地降低疾病的复发	强推荐，证据等级：高
推荐陈述9	建议患者按计划定期复诊，通过持续监测和及时调整实现疾病的长期稳定控制	强推荐，证据等级：低
第三部分　生活方式指导
推荐陈述10	推荐对患者进行个体化营养管理教育，强调均衡营养而非过度限制	强推荐，证据等级：高
推荐陈述11	建议患者适当地参与运动，根据病情阶段选择合适的运动方式	强推荐，证据等级：高
第四部分　特殊人群管理
推荐陈述12	建议育龄期女性患者在疾病缓解期内计划怀孕，并通过合适的药物治疗在整个孕期维持疾病缓解状态	强推荐，证据等级：高
推荐陈述13	建议患者认识并重视溃疡性结肠炎的肠外表现，出现相关症状时及时向医生反映，以便调整治疗方案	强推荐，证据等级：低
推荐陈述14	建议长病程的溃疡性结肠炎患者按照医生建议定期行结肠镜检查，以监测溃疡性结肠炎相关瘤变的发生	强推荐，证据等级：高
推荐陈述15	建议存在焦虑、抑郁等不良情绪的患者主动接受心理评估，接受心理医生或精神科医生的正规治疗	强推荐，证据等级：高

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Expert Consensus on Patient Education in Clinical Practice for Ulcerative Colitis

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Expert Consensus on Patient Education in Clinical Practice for Ulcerative Colitis