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(dòng)旨在通過(guò)推行共決策的理念，助力患者在實(shí)現(xiàn)內(nèi)鏡緩解的同時(shí)，兼顧疾病管理與人生追求

新加坡2025年9月30日 /美通社/ -- 強(qiáng)生公司今日宣布在亞太區(qū)正式啟動(dòng)"雙重人生"行動(dòng)，旨在提升公眾對(duì)強(qiáng)化共決策（SDM）重要性的認(rèn)知，更以這一理念為支撐，助力炎癥性腸病（IBD）患者實(shí)現(xiàn)持續(xù)內(nèi)鏡緩解，讓患者在疾病管理與人生的雙向維度上握穩(wěn)"掌控權(quán)"，綻放更有質(zhì)量的生命狀態(tài)。這行動(dòng)在亞太地區(qū)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(jié)腸炎（UC）影響著全球約1000萬(wàn)人，且在亞洲的發(fā)病率呈增長(zhǎng)趨勢(shì)^1,2,3。IBD多發(fā)于青少年時(shí)期⁴，常見癥狀包括腹瀉、便血、腹痛等癥狀⁵，不僅嚴(yán)重影響患者的學(xué)業(yè)⁶、職業(yè)發(fā)展⁷和人際關(guān)系⁸，更迫使患者過(guò)著表面正常，內(nèi)心煎熬的"雙重生活"。

在全球范圍內(nèi)，大約僅有10%的CD患者能夠達(dá)到臨床持續(xù)緩解⁹，多數(shù)UC患者仍主要依賴傳統(tǒng)治療方案¹⁰。近期，一項(xiàng)來(lái)自亞洲最大規(guī)模新診斷CD患者隊(duì)列研究iCREST-CD的子分析結(jié)果顯示，在臨床緩解的CD患者中，工作時(shí)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(shí)現(xiàn)持續(xù)深度緩解。

近年來(lái)，中國(guó)UC患病率正快速攀升，預(yù)計(jì)2025年將超150萬(wàn)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(rèn)知不足等挑戰(zhàn)。但通過(guò)早診早治、擴(kuò)大治療選擇、加強(qiáng)疾病教育支持等措施，有望幫助更多患者在實(shí)現(xiàn)臨床緩解（以癥狀控制為主）的基礎(chǔ)上，進(jìn)一步達(dá)到內(nèi)鏡緩解（即結(jié)腸鏡下無(wú)活動(dòng)性病變）^14,15。然而，據(jù)相關(guān)調(diào)查顯示，僅不到40%的患者聽說(shuō)過(guò)"黏膜愈合" (內(nèi)鏡緩解) 這一概念^15,16。

愛在延長(zhǎng)炎癥性腸病基金會(huì)聯(lián)合創(chuàng)始人、浙江大學(xué)醫(yī)學(xué)院附屬第二醫(yī)院消化內(nèi)科陳焰主任醫(yī)師強(qiáng)調(diào)："醫(yī)生與患者之間對(duì)治療目標(biāo)的認(rèn)知差異凸顯了共決策的必要性。構(gòu)建互信的醫(yī)患關(guān)系和高效的溝通，不僅是彌合認(rèn)知差距的關(guān)鍵路徑，更能有效推動(dòng)患者深度參與到治療決策中，為其追求人生理想提供堅(jiān)實(shí)支撐。"

不僅如此，醫(yī)患對(duì)"緩解"定義的認(rèn)知差異也會(huì)影響治療預(yù)期和結(jié)果¹⁶。患者往往認(rèn)為"緩解"就是癥狀消失了，而醫(yī)生則會(huì)依據(jù)結(jié)腸鏡等檢測(cè)結(jié)果來(lái)界定這一概念¹⁵。值得注意的是，能通過(guò)內(nèi)鏡觀察到的緩解狀態(tài)，不僅與患者更高的生活質(zhì)量相關(guān)，還能降低其手術(shù)與住院風(fēng)險(xiǎn)¹⁷，并提高持續(xù)緩解的可能性¹⁸。

研究顯示，共決策能夠促進(jìn)醫(yī)患高效協(xié)作，從而改善治療效果¹⁹，但該理念在亞洲地區(qū)的應(yīng)用仍相對(duì)有限。據(jù)全球數(shù)據(jù)顯示，超過(guò)80%的IBD患者和醫(yī)生認(rèn)同并支持共決策這一理念¹⁹。然而在日本，53%的患者擔(dān)心自己在就診時(shí)提問過(guò)多²⁰。在中國(guó)，30%患者對(duì)就診溝通的深度和時(shí)長(zhǎng)感到不滿²¹。

為改善這一現(xiàn)狀，陳焰醫(yī)師及其團(tuán)隊(duì)正依托數(shù)字化平臺(tái)，著力提升中國(guó)患者的疾病認(rèn)知水平與治療參與度："長(zhǎng)期以來(lái)，我們通過(guò)數(shù)字化工具和社交媒體加強(qiáng)患者教育，讓他們以更省時(shí)、省力、低成本的方式獲取關(guān)鍵信息，增強(qiáng)治療信心。"

在IBD領(lǐng)域深耕創(chuàng)新三十余載的堅(jiān)實(shí)基礎(chǔ)上，強(qiáng)生正式啟動(dòng)"雙重人生"行動(dòng)，旨在攜手IBD患者社群，共促疾病診療模式的深度變革。強(qiáng)生創(chuàng)新醫(yī)療亞太區(qū)商業(yè)戰(zhàn)略副總裁Earl Dancel表示："我們致力于彌合診療與醫(yī)患溝通上的差距，幫助患者在有效管理疾病的同時(shí)，重新找回生活的主動(dòng)權(quán)、追尋人生夢(mèng)想。當(dāng)患者掌握正確信息并積極參與治療時(shí)，內(nèi)鏡緩解就不僅僅是一種可能——它更成為實(shí)現(xiàn)雙重人生的重要途經(jīng)，讓健康與理想生活雙向同行。"

該公益行動(dòng)已在亞太地區(qū)推出了系列活動(dòng)，其中包括#我的雙重人生 醫(yī)患共決策賦能視頻，助力患者提升疾病管理主動(dòng)權(quán); 即將在中國(guó)上線的#YouSeeUC科普項(xiàng)目，旨在打破患者對(duì)緩解認(rèn)知的誤區(qū)并推行共決策理念；在日本推出的由醫(yī)療專家參與訪談的疾病教育內(nèi)容，為IBD患者提供平衡工作與健康的專業(yè)指導(dǎo)；在新加坡通過(guò)媒體分享患者真實(shí)故事，傳遞疾病管理經(jīng)驗(yàn)。

關(guān)于"雙重人生"行動(dòng)

"雙重人生"行動(dòng)是一項(xiàng)新型患者賦能倡議，旨在通過(guò)提供科學(xué)的共決策（SDM）工具，彌合醫(yī)患在IBD治療目標(biāo)認(rèn)知上的差距。該行動(dòng)與胃腸病學(xué)家、倡導(dǎo)團(tuán)體及媒體合作，致力于通過(guò)共決策實(shí)現(xiàn)內(nèi)鏡緩解，助力患者同時(shí)掌控疾病管理與人生追求。

關(guān)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(jié)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(jì)以來(lái)，西方國(guó)家IBD發(fā)病率趨于穩(wěn)定，而亞洲地區(qū)發(fā)病率持續(xù)攀升³。IBD多發(fā)于青少年時(shí)期⁴，對(duì)患者的學(xué)業(yè)⁶、職業(yè)發(fā)展⁷及人際關(guān)系⁸均構(gòu)成影響。

目前IBD尚無(wú)法根治，主要治療目標(biāo)是實(shí)現(xiàn)并維持緩解。IBD緩解包含以下層面：癥狀控制表現(xiàn)為活動(dòng)性癥狀消失；內(nèi)鏡緩解指結(jié)腸鏡下未見活動(dòng)性病變；組織學(xué)緩解則要求組織層面無(wú)活動(dòng)性炎癥¹⁵。

關(guān)于強(qiáng)生

在強(qiáng)生，我們堅(jiān)信健康就是一切。憑借在醫(yī)療健康領(lǐng)域的創(chuàng)新實(shí)力，我們致力于打造一個(gè)全新的世界。在這里，復(fù)雜疾病能夠得到預(yù)防、診療和治愈，治療方法更智能、更微創(chuàng)、更個(gè)性化。基于我們?cè)卺t(yī)療科技和創(chuàng)新制藥兩方面得天獨(dú)厚的綜合實(shí)力，我們?cè)谡麄€(gè)醫(yī)療健康行業(yè)不斷創(chuàng)新突破，勇毅前行，為人類健康事業(yè)的發(fā)展帶來(lái)意義深遠(yuǎn)的影響。

更多信息請(qǐng)?jiān)L問https://www.jnj.com/。

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