聚焦IBD患者“双重人生”：强生在亚太区启动行动，赋能疾病管理与理想生活

 强生公司官宣，在亚太区正式启动“双重人生”行动。此举旨在提升公众对强化共决策（SDM）的认知，并以此理念为核心，帮助炎症性肠病（IBD）患者达成持续内镜缓解的目标，让他们既能管理好疾病，也能掌控人生，活出更高质量。该行动已在亚太地区同步推出一系列疾病教育资源。

作为炎症性肠病（IBD）的两大主要类型，克罗恩病（CD）和溃疡性结肠炎（UC）影响着全球约1000万人，且亚洲地区发病率呈上升趋势。IBD多发于青少年时期，常见腹泻、便血、腹痛等症状，不仅严重干扰患者的学业、职业发展与人际关系，更使其陷入表面正常、内心煎熬的“双重生活”。

     全球范围内，仅约10%的CD患者能实现临床持续缓解，多数UC患者仍依赖传统治疗方案。亚洲最大规模新诊断CD患者队列研究iCREST-CD的子分析显示，临床缓解的CD患者中，25.7%在工作时受影响，显著高于日本整体人群的20.1%，这说明需更有效的疾病管理以达成持续深度缓解。

     中国UC患病率正快速上升，预计2025年将超150万例。许多患者面临诊断延迟、生物制剂可及性低、疾病认知不足等挑战，但通过早诊早治、扩大治疗选择、加强疾病教育等措施，有望在临床缓解基础上进一步实现内镜缓解。不过，相关调查显示，仅不足40%的患者听说过“黏膜愈合”（内镜缓解）概念。爱在延长炎症性肠病基金会联合创始人、浙江大学医学院附属第二医院消化内科陈焰主任医师指出：“医患间治疗目标的认知差异凸显共决策的必要性。构建互信医患关系与高效沟通，是弥合认知差距的关键，也能推动患者深度参与治疗决策，为追求人生理想提供支撑。”

    此外，医患对“缓解”定义的认知差异会影响治疗预期与结果。患者常认为“缓解”即症状消失，而医生会依据结肠镜等检测结果界定。值得关注的是，内镜可见的缓解状态，不仅关联更高生活质量，还能降低手术与住院风险，提升持续缓解概率。

     研究表明，共决策可促进医患协作、改善治疗效果，但在亚洲应用有限。全球数据显示，超80%的IBD患者和医生认同共决策理念，可在日本，53%的患者担心就诊时提问过多；在中国，30%的患者对就诊沟通的深度和时长不满。

     为改善这一情况，陈焰医师及其团队正借助数字化平台提升中国患者的疾病认知与治疗参与度：“长期以来，我们通过数字化工具和社交媒体开展患者教育，让他们能更省时、省力、低成本地获取关键信息，增强治疗信心。”

     依托在IBD领域三十余年的创新深耕，强生启动“双重人生”行动，旨在联合IBD患者社群，推动疾病诊疗模式深度变革。强生创新医疗亚太区商业战略副总裁Earl Dancel表示：“我们致力于弥合诊疗与医患沟通的差距，帮助患者在有效管理疾病的同时，重获生活主动权、追寻人生梦想。当患者掌握正确信息并积极参与治疗，内镜缓解就不只是可能，更成为实现‘双重人生’的重要途径，让健康与理想生活并行。”

     目前，该公益行动已在亚太推出系列活动：包括#我的双重人生 医患共决策赋能视频，助力患者提升疾病管理主动权；即将在中国上线的#YouSeeUC科普项目，旨在打破患者对缓解认知的误区并推广共决策理念；在日本推出医疗专家参与访谈的疾病教育内容，为患者提供平衡工作与健康的专业指导；在新加坡通过媒体分享患者真实故事，传递疾病管理经验。

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