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?。↖BD)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?。–D)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?;颊咄J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?。↖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?;谖覀冊卺t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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