最新研究顯示：即使處于臨床緩解期，克羅恩病患者在工作上受到的影響程度仍高于普通人群

該行動旨在通過推行共決策的理念，助力患者在實現內鏡緩解的同時，兼顧疾病管理與人生追求

新加坡2025年9月30日 /美通社/ -- 強生公司今日宣布在亞太區正式啟動"雙重人生"行動，旨在提升公眾對強化共決策（SDM）重要性的認知，更以這一理念為支撐，助力炎癥性腸病（IBD）患者實現持續內鏡緩解，讓患者在疾病管理與人生的雙向維度上握穩"掌控權"，綻放更有質量的生命狀態。這行動在亞太地區提供了一系列疾病教育資源。

作為IBD的兩種主要類型，克羅恩病（CD）和潰瘍性結腸炎（UC）影響著全球約1000萬人，且在亞洲的發病率呈增長趨勢^1,2,3。IBD多發于青少年時期⁴，常見癥狀包括腹瀉、便血、腹痛等癥狀⁵，不僅嚴重影響患者的學業⁶、職業發展⁷和人際關系⁸，更迫使患者過著表面正常，內心煎熬的"雙重生活"。

在全球范圍內，大約僅有10%的CD患者能夠達到臨床持續緩解⁹，多數UC患者仍主要依賴傳統治療方案¹⁰。近期，一項來自亞洲最大規模新診斷CD患者隊列研究iCREST-CD的子分析結果顯示，在臨床緩解的CD患者中，工作時受到影響的患者比例為25.7%，顯著高于日本整體人群的20.1%^11,12。這表明需要更有效的疾病管理以實現持續深度緩解。

近年來，中國UC患病率正快速攀升，預計2025年將超150萬例¹³。許多患者仍面臨診斷延遲、生物制劑可及性有限、疾病認知不足等挑戰。但通過早診早治、擴大治療選擇、加強疾病教育支持等措施，有望幫助更多患者在實現臨床緩解（以癥狀控制為主）的基礎上，進一步達到內鏡緩解（即結腸鏡下無活動性病變）^14,15。然而，據相關調查顯示，僅不到40%的患者聽說過"黏膜愈合" (內鏡緩解) 這一概念^15,16。

愛在延長炎癥性腸病基金會聯合創始人、浙江大學醫學院附屬第二醫院消化內科陳焰主任醫師強調："醫生與患者之間對治療目標的認知差異凸顯了共決策的必要性。構建互信的醫患關系和高效的溝通，不僅是彌合認知差距的關鍵路徑，更能有效推動患者深度參與到治療決策中，為其追求人生理想提供堅實支撐。"

不僅如此，醫患對"緩解"定義的認知差異也會影響治療預期和結果¹⁶。患者往往認為"緩解"就是癥狀消失了，而醫生則會依據結腸鏡等檢測結果來界定這一概念¹⁵。值得注意的是，能通過內鏡觀察到的緩解狀態，不僅與患者更高的生活質量相關，還能降低其手術與住院風險¹⁷，并提高持續緩解的可能性¹⁸。

研究顯示，共決策能夠促進醫患高效協作，從而改善治療效果¹⁹，但該理念在亞洲地區的應用仍相對有限。據全球數據顯示，超過80%的IBD患者和醫生認同并支持共決策這一理念¹⁹。然而在日本，53%的患者擔心自己在就診時提問過多²⁰。在中國，30%患者對就診溝通的深度和時長感到不滿²¹。

為改善這一現狀，陳焰醫師及其團隊正依托數字化平臺，著力提升中國患者的疾病認知水平與治療參與度："長期以來，我們通過數字化工具和社交媒體加強患者教育，讓他們以更省時、省力、低成本的方式獲取關鍵信息，增強治療信心。"

在IBD領域深耕創新三十余載的堅實基礎上，強生正式啟動"雙重人生"行動，旨在攜手IBD患者社群，共促疾病診療模式的深度變革。強生創新醫療亞太區商業戰略副總裁Earl Dancel表示："我們致力于彌合診療與醫患溝通上的差距，幫助患者在有效管理疾病的同時，重新找回生活的主動權、追尋人生夢想。當患者掌握正確信息并積極參與治療時，內鏡緩解就不僅僅是一種可能——它更成為實現雙重人生的重要途經，讓健康與理想生活雙向同行。"

該公益行動已在亞太地區推出了系列活動，其中包括#我的雙重人生 醫患共決策賦能視頻，助力患者提升疾病管理主動權; 即將在中國上線的#YouSeeUC科普項目，旨在打破患者對緩解認知的誤區并推行共決策理念；在日本推出的由醫療專家參與訪談的疾病教育內容，為IBD患者提供平衡工作與健康的專業指導；在新加坡通過媒體分享患者真實故事，傳遞疾病管理經驗。

關于"雙重人生"行動

"雙重人生"行動是一項新型患者賦能倡議，旨在通過提供科學的共決策（SDM）工具，彌合醫患在IBD治療目標認知上的差距。該行動與胃腸病學家、倡導團體及媒體合作，致力于通過共決策實現內鏡緩解，助力患者同時掌控疾病管理與人生追求。

關于炎癥性腸病

炎癥性腸病（IBD）是一類慢性非特異性消化道炎癥性疾病，主要包括克羅恩病和潰瘍性結腸炎¹。常見癥狀包括腹瀉、便血、體重減輕、口腔潰瘍及腹痛⁵。自21世紀以來，西方國家IBD發病率趨于穩定，而亞洲地區發病率持續攀升³。IBD多發于青少年時期⁴，對患者的學業⁶、職業發展⁷及人際關系⁸均構成影響。

目前IBD尚無法根治，主要治療目標是實現并維持緩解。IBD緩解包含以下層面：癥狀控制表現為活動性癥狀消失；內鏡緩解指結腸鏡下未見活動性病變；組織學緩解則要求組織層面無活動性炎癥¹⁵。

關于強生

在強生，我們堅信健康就是一切。憑借在醫療健康領域的創新實力，我們致力于打造一個全新的世界。在這里，復雜疾病能夠得到預防、診療和治愈，治療方法更智能、更微創、更個性化。基于我們在醫療科技和創新制藥兩方面得天獨厚的綜合實力，我們在整個醫療健康行業不斷創新突破，勇毅前行，為人類健康事業的發展帶來意義深遠的影響。

更多信息請訪問https://www.jnj.com/。

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