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(xiàn)內(nèi)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(qū)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?。↖BD)患者實現(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1000萬人,且在亞洲的發(fā)病率呈增長趨勢1,2,3。IBD多發(fā)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(xué)業(yè)6、職業(yè)發(fā)展7和人際關(guān)系8,更迫使患者過著表面正常,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,一項來自亞洲最大規(guī)模新診斷CD患者隊列研究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(xiàn)持續(xù)深度緩解。
近年來,中國UC患病率正快速攀升,預(yù)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(zhàn)。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(xiàn)臨床緩解(以癥狀控制為主)的基礎(chǔ)上,進一步達到內(nèi)鏡緩解(即結(jié)腸鏡下無活動性病變)14,15。然而,據(jù)相關(guān)調(diào)查顯示,僅不到40%的患者聽說過"黏膜愈合" (內(nèi)鏡緩解) 這一概念15,16。
愛在延長炎癥性腸病基金會聯(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)師強調(diào):"醫(yī)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(gòu)建互信的醫(yī)患關(guān)系和高效的溝通,不僅是彌合認知差距的關(guān)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(yī)患對"緩解"定義的認知差異也會影響治療預(yù)期和結(jié)果16?;颊咄J為"緩解"就是癥狀消失了,而醫(yī)生則會依據(jù)結(jié)腸鏡等檢測結(jié)果來界定這一概念15。值得注意的是,能通過內(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)用仍相對有限。據(jù)全球數(shù)據(jù)顯示,超過80%的IBD患者和醫(yī)生認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(xiàn)狀,陳焰醫(yī)師及其團隊正依托數(shù)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(shù)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(guān)鍵信息,增強治療信心。"
在IBD領(lǐng)域深耕創(chuàng)新三十余載的堅實基礎(chǔ)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(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,重新找回生活的主動權(quán)、追尋人生夢想。當患者掌握正確信息并積極參與治療時,內(nèi)鏡緩解就不僅僅是一種可能——它更成為實現(xiàn)雙重人生的重要途經(jīng),讓健康與理想生活雙向同行。"
該公益行動已在亞太地區(qū)推出了系列活動,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權(quán); 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(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);在新加坡通過媒體分享患者真實故事,傳遞疾病管理經(jīng)驗。
關(guān)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(xué)的共決策(SDM)工具,彌合醫(yī)患在IBD治療目標認知上的差距。該行動與胃腸病學(xué)家、倡導(dǎo)團體及媒體合作,致力于通過共決策實現(xiàn)內(nèi)鏡緩解,助力患者同時掌控疾病管理與人生追求。
關(guān)于炎癥性腸病
炎癥性腸?。↖BD)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世紀以來,西方國家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)于青少年時期4,對患者的學(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尚無法根治,主要治療目標是實現(xiàn)并維持緩解。IBD緩解包含以下層面:癥狀控制表現(xiàn)為活動性癥狀消失;內(nèi)鏡緩解指結(jié)腸鏡下未見活動性病變;組織學(xué)緩解則要求組織層面無活動性炎癥15。
關(guān)于強生
在強生,我們堅信健康就是一切。憑借在醫(yī)療健康領(lǐng)域的創(chuàng)新實力,我們致力于打造一個全新的世界。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)、更個性化?;谖覀冊卺t(yī)療科技和創(chuàng)新制藥兩方面得天獨厚的綜合實力,我們在整個醫(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)展帶來意義深遠的影響。
更多信息請訪問https://www.jnj.com/。
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