2017-01-012024-05-13https://scholars.lib.ntu.edu.tw/handle/123456789/647697摘要：壹、背景：新生兒延長性黃疸是相當常見的問題，近年來衛生福利部積極推動母乳哺育政策，我國嬰兒母乳哺育率明顯提升。新生兒延長性黃疸超過出生後兩週甚至四週者相當常見。部份嬰兒延長性黃疸是因為嚴重的膽汁滯留所引起，卻常被誤以為是母乳哺育所造成黃疸，以致延誤早期診治時機，而失去生命，或需要換肝。膽汁滯留症之中以膽道閉鎖為兒童肝病最常見之致死原因，及換肝的主因。在國民健康署的支持下，我們於2004年開始推展世界第一個『全國性嬰兒大便辨識卡篩檢膽道閉鎖症』之工作，也證明因此系統之實施，使膽道閉鎖兒之小於60天手術率、3年及5年存活率，均有明顯進步。但是相較於日本東北大學所報告的日本膽道閉鎖兒之10年存活率，台灣膽道閉鎖嬰兒，在實施全國性大便顏色卡篩檢之後的年代出生者，只追蹤至5年的時間仍不夠長，值得探討。自2009年起我們將兒童健康手冊中大便卡不正常顏色由原本的三色增為六色，大便卡因此提昇為九色嬰兒大便辨識卡，期盼能幫助家長及醫護人員能早期發現、及早診治。只使用嬰兒大便辨識卡進行篩檢膽道閉鎖仍有所不足，自2012年開始，我們努力研發建立新直接/總膽紅素微量檢測法，期望補足可能未注意或誤認大便顏色的情形，提升早期篩檢膽汁滯留症的精確性。我們希望以微量抽血方式減少嬰兒抽血量，以增加家長對於嬰兒抽血的意願。我們雖然籌劃及建立『同時檢驗直接及總膽紅素並求其比值微量檢測法』，並於北中南各地開始推廣。然大多數醫護人員受到過去數十年傳統只驗總膽紅素不驗直接膽紅素的影響，對延長性黃疸嬰兒同時檢驗直接及總膽紅素的觀念認知仍極為不足。受限於檢驗部門設備、行政單位協調、人力成本等問題，此小兒微量檢測法的新觀念尚待努力推廣。貳、目的：（一）提供嬰兒大便卡諮詢專線之維護與正常運作，及辦理醫事人員與機構之教育推廣。（二）監測嬰兒膽道閉鎖等相關肝膽疾病之發生率、接受診治之相關統計（如：確診率、確診天數、接受手術天數與比率、發生肝硬化及換肝…等）資訊。（三）追蹤及統計分析膽道閉鎖病童5年及10年存活率。（四）強化醫療機構以「預防注射網路通報系統」進行嬰兒膽道閉鎖症之篩檢通報。（五）探討現行9色嬰兒大便卡及微量檢驗直接膽紅素 (D-BIL)、總膽紅素(T-BIL)及其比值等方式，診斷嬰兒膽道閉之篩檢結果及成效。参、研究方法：1.收集國外嬰兒膽道閉鎖發生率、注意國內外相關新發表實證文獻，及分析歷年索取授權使用「嬰兒大便辨識卡」國家，在其國家推廣此卡之情形。2.以大便卡諮詢專線(02-2382-0886)，提供諮詢及通報之功能，協助一般民眾及嬰兒照顧者對嬰兒大便顏色、黃疸及膽道閉鎖等相關問題之正確認知，異常大便顏色及膽道閉鎖個案的通報功能; 針對諮詢內容進行相關統計分析，就常見問題研擬Q&A，並放置於國民健康署網站，做為民眾、醫事人員教育訓練之參考。3.建立種子老師制度，並研製適合不同對象宣導之衛教內容，如民眾版、專業人士版，並製作成統一簡報教材或衛教單張，提供適當教育訓練簡報教材，進行分眾宣導及觀念教育，每年至少2場；人數至少300人/年，加強嬰兒膽道閉鎖高發生率地區之醫療院所宣導。4.探討國內各醫療院所以九色嬰兒大便辨識卡於篩檢膽道閉鎖與膽汁滯留症之篩檢執行情況、困難及改善建議。5.強化全國醫療機構以「預防注射網路通報系統」進行嬰兒膽道閉鎖症之篩檢通報率；透過提供誘因，鼓勵醫事人員正確使用網路篩檢通報，以利及時掌握大便顏色異常個案，給予輔導或轉介。6.分析國內嬰兒肝膽疾病之發生率、發現異常大便顏色的天數、接受手術天數與比率及長程追蹤五年及十年存活率、換肝、追蹤後續存活率等資訊之相關性7.探討參與嬰兒延長性黃疸鑑別診斷課程之醫院，執行小兒微量檢測同時檢驗直接及總膽紅篩檢膽道閉鎖的現況或成效分析,讓所有的延長性新生兒黃疸的嬰兒都能以極少的血量與簡便的方法檢測，持續推廣”不論以任何的採血方式，都必須同時檢驗直接及總膽紅素並求其比值”的觀念。8.輔導建立全國可執行檢驗微量檢測直接及總膽紅素之全國醫事檢驗機構，建立新的“檢驗網＂以供全國各地民眾查詢或基層診所醫療人員轉檢，為了補足目前在診所及地區醫院就診嬰兒無此篩檢服務，擬建立目前已可配合以微量檢測方式檢驗直接膽紅素及總膽紅素的醫療院所或檢驗所名單，並以全國各地區及醫療院所層級分類。<br> Abstract: Background :Neonatal jaundice is a common health problem in infants. In recent years, due to the active promotion of breast feeding policy, the rate of breast feeding has increased remarkably. It is quite common to find prolonged neonatal jaundice at two to four weeks old infants. Part of the prolonged neonatal jaundice are caused by cholestasis, but which are often mistaken as breast feeding jaundice, thus delaying the opportunity of early diagnosis and timely operation, resulting in child mortality or a need for liver transplantation. In 2009, we have increased the abnormal stool colors from 3 to 6 stool colors in the stool color card screening program, and established a new direct/total bilirubin micro-detection method, aiming to reduce the misrecognition of the stool color. Most medical personnel and caretakers are still unfamiliar with the simultaneous detection of direct/total bilirubin for infants with prolonged jaundice, thus requiring further promotion. If infants with biliary atresia can be diagnosed and operated at an early stage, the prognosis of those infants will be improved. Aims :1. Provide stool card consultation hotline, and educational program for medical personnel and organization.2. To maintain the biliary atresia reporting system to monitor the incidence, and status of diagnosis, treatment and outcome.3. To follow-up and analyze 5 and 10 year-survival rates of biliary atresia in children.4. To promote timely use of the MOHW immunization online reporting system to for screening and reporting testing biliary atresia in infants.5. To discuss the outcome and effect of 9-colored stool color card and micro-method of direct/total bilirubin.Methods :1. To collect the incidence of infant biliary atresia in other countries, to note newly published evidence-based literatures both domestically and internationally, and to analyze the status of stool color card promotion within the countries which requested to use our stool color card over the past years.2. To maintain a consultation / reporting hotline (02-23820886) to assist citizens and infant caretakers to correctly recognize stool color, jaundice and biliary atresia in infants and to offer a reporting function for cases of abnormal infant stool color and biliary atresia. To carry out statistical analysis on consultation contents and draft common related Q&A to put on the website of Health Promotion Administration as references for general population and medical personnel’s education and training purposes. 3. To establish seed teacher system, and develop educational materials suitable for different audiences(such as versions for the general population and medical personnel); incorporating these materials into unified teaching material or health educational leaflet for the promotion and concept education in focused audiences at least two times per year), covering at least 300 participants. To reinforce promotion in healthcare institutions in areas with relatively high infant biliary atresia incidence. .4. To investigate the implementing status, difficulties, and suggestions of biliary atresia and cholestasis screening using the 9-colored stool color card in healthcare institutions.5. To reinforce the reporting rate of infant biliary atresia screening using “immunization online reporting system” by healthcare institutions. Encourage medical personnel to use internet screening report correctly by providing incentives in order to identify, guide, or make referral in cases of abnormal stool color.6. To analyze the correlations between occurrences of domestic infant hepatobiliary disorders, the number of days to detect abnormal stool color, the number of days to undergo surgery and its rate, long-term follow-ups, including 5- and 10- year survival rate, liver transplantation rate, and related survival rate etc. 7. To investigate understand the status and efficacy of micro-method to detect direct/total bilirubin by hospitals participating in the infant prolonged jaundice diagnosis program, so that all infants with prolonged jaundice can be detected using minimum amount of blood and simple method. Continue to promote the concept of checking direct/total bilirubin and its ratio simultaneously with any blood obtaining method. 8.To guide the establishment of national medical inspection institutions that are able to inspect micro-detection of direct/total bilirubin. To establish the new “Network of Inspection” for the general population to search and medical personnel to make referral. In order to compensate for infants without such screening services in clinics and regional hospitals, it is aimed to establish provide a name list containing all healthcare institutions or medical inspection institutions (stratified into region and institution scale) which can conduct micro-method for checking direct/total bilirubin.新生兒黃疸膽汁滯留症膽道閉鎖嬰兒大便辨識卡直接及總膽紅素比值neonatal jaundicecholestasisbiliary atresiainfant stool color carddirect and total bilirubin