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强生启动"双重人生"行动，在亚太区助力炎症性肠病患者兼顾疾病管理和人生追求

2025-10-11 09:30:38

最新研究显示：即使处于临床缓解期，克罗恩病患者在工作上受到的影响程度仍高于普通人群

该行动旨在通过推行共决策的理念，助力患者在实现内镜缓解的同时，兼顾疾病管理与人生追求

新加坡2025年9月30日 /美通社/ -- 强生公司今日宣布在亚太区正式启动"双重人生"行动，旨在提升公众对强化共决策（SDM）重要性的认知，更以这一理念为支撑，助力炎症性肠病（IBD）患者实现持续内镜缓解，让患者在疾病管理与人生的双向维度上握稳"掌控权"，绽放更有质量的生命状态。这行动在亚太地区提供了一系列疾病教育资源。


作为IBD的两种主要类型，克罗恩病（CD）和溃疡性结肠炎（UC）影响着全球约1000万人，且在亚洲的发病率呈增长趋势1,2,3。IBD多发于青少年时期4，常见症状包括腹泻、便血、腹痛等症状5，不仅严重影响患者的学业6、职业发展7和人际关系8，更迫使患者过着表面正常，内心煎熬的"双重生活"。

在全球范围内，大约仅有10%的CD患者能够达到临床持续缓解9，多数UC患者仍主要依赖传统治疗方案10。近期，一项来自亚洲最大规模新诊断CD患者队列研究iCREST-CD的子分析结果显示，在临床缓解的CD患者中，工作时受到影响的患者比例为25.7%，显著高于日本整体人群的20.1%11,12。这表明需要更有效的疾病管理以实现持续深度缓解。

近年来，中国UC患病率正快速攀升，预计2025年将超150万例13。许多患者仍面临诊断延迟、生物制剂可及性有限、疾病认知不足等挑战。但通过早诊早治、扩大治疗选择、加强疾病教育支持等措施，有望帮助更多患者在实现临床缓解（以症状控制为主）的基础上，进一步达到内镜缓解（即结肠镜下无活动性病变）14,15。然而，据相关调查显示，仅不到40%的患者听说过"黏膜愈合" (内镜缓解) 这一概念15,16。

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强调："医生与患者之间对治疗目标的认知差异凸显了共决策的必要性。构建互信的医患关系和高效的沟通，不仅是弥合认知差距的关键路径，更能有效推动患者深度参与到治疗决策中，为其追求人生理想提供坚实支撑。"

不仅如此，医患对"缓解"定义的认知差异也会影响治疗预期和结果16。患者往往认为"缓解"就是症状消失了，而医生则会依据结肠镜等检测结果来界定这一概念15。值得注意的是，能通过内镜观察到的缓解状态，不仅与患者更高的生活质量相关，还能降低其手术与住院风险17，并提高持续缓解的可能性18。

研究显示，共决策能够促进医患高效协作，从而改善治疗效果19，但该理念在亚洲地区的应用仍相对有限。据全球数据显示，超过80%的IBD患者和医生认同并支持共决策这一理念19。然而在日本，53%的患者担心自己在就诊时提问过多20。在中国，30%患者对就诊沟通的深度和时长感到不满21。

为改善这一现状，陈焰医师及其团队正依托数字化平台，着力提升中国患者的疾病认知水平与治疗参与度："长期以来，我们通过数字化工具和社交媒体加强患者教育，让他们以更省时、省力、低成本的方式获取关键信息，增强治疗信心。"

在IBD领域深耕创新三十余载的坚实基础上，强生正式启动"双重人生"行动，旨在携手IBD患者社群，共促疾病诊疗模式的深度变革。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上的差距，帮助患者在有效管理疾病的同时，重新找回生活的主动权、追寻人生梦想。当患者掌握正确信息并积极参与治疗时，内镜缓解就不仅仅是一种可能——它更成为实现双重人生的重要途经，让健康与理想生活双向同行。"

该公益行动已在亚太地区推出了系列活动，其中包括#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行共决策理念；在日本推出的由医疗专家参与访谈的疾病教育内容，为IBD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。

关于"双重人生"行动

"双重人生"行动是一项新型患者赋能倡议，旨在通过提供科学的共决策（SDM）工具，弥合医患在IBD治疗目标认知上的差距。该行动与胃肠病学家、倡导团体及媒体合作，致力于通过共决策实现内镜缓解，助力患者同时掌控疾病管理与人生追求。

关于炎症性肠病

炎症性肠病（IBD）是一类慢性非特异性消化道炎症性疾病，主要包括克罗恩病和溃疡性结肠炎1。常见症状包括腹泻、便血、体重减轻、口腔溃疡及腹痛5。自21世纪以来，西方国家IBD发病率趋于稳定，而亚洲地区发病率持续攀升3。IBD多发于青少年时期4，对患者的学业6、职业发展7及人际关系8均构成影响。

目前IBD尚无法根治，主要治疗目标是实现并维持缓解。IBD缓解包含以下层面：症状控制表现为活动性症状消失；内镜缓解指结肠镜下未见活动性病变；组织学缓解则要求组织层面无活动性炎症15。

关于强生

在强生，我们坚信健康就是一切。凭借在医疗健康领域的创新实力，我们致力于打造一个全新的世界。在这里，复杂疾病能够得到预防、诊疗和治愈，治疗方法更智能、更微创、更个性化。基于我们在医疗科技和创新制药两方面得天独厚的综合实力，我们在整个医疗健康行业不断创新突破，勇毅前行，为人类健康事业的发展带来意义深远的影响。

更多信息请访问https://www.jnj.com/。

参考文献

  1. Crohn's & Colitis Foundation. (n.d.). What is IBD? Crohn's & Colitis Foundation. Retrieved September 4, 2025, from https://www.crohnscolitisfoundation.org/patientsandcaregivers/what-is-ibd
  2. Pathiyil, M. M., Jena, A., Venkataramana Raju, A. K., Omprakash, T. A., Sharma, V., & Sebastian, S. (2023a). Representation and reporting of diverse groups in randomised controlled trials of pharmacological agents in inflammatory bowel disease: A systematic review. The Lancet Gastroenterology & Hepatology, 8(12), 1143–1151. https://doi.org/10.1016/s2468-1253(23)00193-0
  3. Chen, X., Xiang, X., Xia, W., Li, X., Wang, S., Ye, S., Tian, L., Zhao, L., Ai, F., Shen, Z., Nie, K., Deng, M., & Wang, X. (2023). Evolving Trends and Burden of Inflammatory Bowel Disease in Asia, 1990-2019: A Comprehensive Analysis Based on the Global Burden of Disease Study. Journal of epidemiology and global health, 13(4), 725–739. https://doi.org/10.1007/s44197-023-00145-w
  4. Rosen, M. J., Dhawan, A., & Saeed, S. A. (2015). Inflammatory Bowel Disease in Children and Adolescents. JAMA pediatrics, 169(11), 1053–1060. https://doi.org/10.1001/jamapediatrics.2015.1982
  5. SingHealth. (n.d.). Inflammatory bowel disease – Conditions & treatments. SingHealth. Retrieved September 4, 2025, from https://www.singhealth.com.sg/symptoms-treatments/inflammatory-bowel-disease
  6. Giga, A., Pappa, D., Manthou, P., Chryssi, M., Kollia, T., Varvitsioti, D., Giatromanolakis, E., Anastasiou, N., Zigkiri, E., & Mangoulia, P. (2024). Psychological Impact of Inflammatory Bowel Disease on University Students: A Systematic Review. Cureus, 16(4), e59176. https://doi.org/10.7759/cureus.59176
  7. Marri, S. R., & Buchman, A. L. (2005). The education and employment status of patients with inflammatory bowel diseases. Inflammatory bowel diseases, 11(2), 171–177. https://doi.org/10.1097/00054725-200502000-00011
  8. Rouncefield-Swales, A., Carter, B., Bray, L., Blake, L., Allen, S., Probert, C., Crook, K., & Qualter, P. (2020). Sustaining, Forming, and Letting Go of Friendships for Young People with Inflammatory Bowel Disease (IBD): A Qualitative Interview-Based Study. International journal of chronic diseases, 2020, 7254972. https://doi.org/10.1155/2020/7254972
  9. Vermeire, S., Schreiber, S., Petryka, R., Kuehbacher, T., Hebuterne, X., Roblin, X., Klopocka, M., Goldis, A., Wisniewska-Jarosinska, M., Baranovsky, A., Sike, R., Stoyanova, K., Tasset, C., Van der Aa, A., & Harrison, P. (2017). Clinical remission in patients with moderate-to-severe Crohn's disease treated with filgotinib (the FITZROY study): results from a phase 2, double-blind, randomised, placebo-controlled trial. Lancet (London, England), 389(10066), 266–275. https://doi.org/10.1016/S0140-6736(16)32537-5
  10. Crohn's & Colitis Foundation. (2022, December 20). Study finds significant room for improvement in ulcerative colitis treatments. Crohn's & Colitis Foundation. Retrieved September 4, 2025, from https://www.crohnscolitisfoundation.org/blog/study-finds-significant-room-improvement-ulcerative-colitis-treatments
  11. Tamura, A., Fujii, T., Chinen, M., Yoshigoe, S., Tsuchiya, H., Matsuoka, K., Okamoto, R., & Hisamatsu, T. (2025, July). Impact on work productivity and its association with fatigue in newly diagnosed patients with Crohn's disease: A sub-analysis of iCREST-CD [Conference presentation]. 13th Annual Meeting of the Asian Organization for Crohn's & Colitis (AOCC), Shinjuku-Ku, Tokyo, Japan
  12. Matsuoka, K., Fujii, T., Okamoto, R., et al. (2022). Characteristics of adult patients newly diagnosed with Crohn's disease: Interim analysis of the nation-wide inception cohort registry study of patients with Crohn's disease in Japan (iCREST-CD). Journal of Gastroenterology, 57(8), 867–878. https://doi.org/10.1007/s00535-022-01907-2
  13. Yu, Z., Ruan, G., Bai, X., Sun, Y., Yang, H., & Qian, J. (2024). Growing burden of inflammatory bowel disease in China: Findings from the Global Burden of Disease Study 2021 and predictions to 2035. Chinese medical journal, 137(23), 2851–2859. https://doi.org/10.1097/CM9.0000000000003345
  14. Wan, J., Shen, J., Zhong, J., Ge, W., Miao, Y., Zhang, X., Wen, Z., Wang, Y., Liang, J., & Wu, K. (2024). Natural course of ulcerative colitis in China: Differences from the West?. United European gastroenterology journal, 12(9), 1167–1178. https://doi.org/10.1002/ueg2.12634
  15. Wood, D. W., Treiman, K., Rivell, A., van Deen, W. K., Heyison, H., Mattar, M. C., Power, S., Strauss, A., Syal, G., Zullow, S., & Ehrlich, O. G. (2025). Communicating Information Regarding IBD Remission to Patients: Evidence From a Survey of Adult Patients in the United States. Inflammatory bowel diseases, 31(6), 1605–1615. https://doi.org/10.1093/ibd/izae201
  16. Rubin, D. T., Sninsky, C., Siegmund, B., Sans, M., Hart, A., Bressler, B., Bouhnik, Y., Armuzzi, A., & Afzali, A. (2021). International Perspectives on Management of Inflammatory Bowel Disease: Opinion Differences and Similarities Between Patients and Physicians From the IBD GAPPS Survey. Inflammatory bowel diseases, 27(12), 1942–1953. https://doi.org/10.1093/ibd/izab006
  17. Neff-Baro, S., et al. (2024, October 12–15). Endoscopic response at 1-year and association with long-term Crohn's disease outcome: A pooled clinical trial analysis adjusting for 1-year clinical remission status [Poster presentation, MP153]. United European Gastroenterology Week (UEGW), Vienna, Austria.
  18. Kanazawa, M., Takahashi, F., Tominaga, K., Abe, K., Izawa, N., Fukushi, K., Nagashima, K., Kanamori, A., Takenaka, K., Sugaya, T., Iijima, M., Takada, A., Imai, Y., Hiraishi, H., & Irisawa, A. (2019). Relationship between endoscopic mucosal healing and histologic inflammation during remission maintenance phase in ulcerative colitis: a retrospective study. Endoscopy international open, 7(4), E568–E575. https://doi.org/10.1055/a-0869-7619
  19. Crohn's & Colitis Foundation. (n.d.). Treatment approaches: Shared decision-making. Crohn's & Colitis Foundation. Retrieved September 4, 2025, from https://www.crohnscolitisfoundation.org/patientsandcaregivers/shared-decision-making
  20. Watanabe, K., Gardiner, S., & Arai, S. (2022). Notable gaps between patients' and physicians' perspectives on communication and disease management in Japan: Multifaceted ad hoc analyses of the global Ulcerative Colitis Narrative Survey for further optimal care. Therapeutic Advances in Gastroenterology, 15, 1–12. https://doi.org/10.1177/17562848221095372
  21. Xu, D., Zhang, H., & Chen, Y. (2021). Patients' views of shared decision making in inflammatory bowel disease: a survey in China. BMC medical informatics and decision making, 21(1), 340. https://doi.org/10.1186/s12911-021-01702-8


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