2014-01-012024-05-13https://scholars.lib.ntu.edu.tw/handle/123456789/647639摘要：背景：新生兒黃疸是相當常見的問題，由於近年來衛生署積極推動母乳哺育政策，我國嬰兒母乳哺育率明顯提升。因此新生兒延長性黃疸超過出生後兩週甚至四週者相當常見。肝外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。雖有部份嬰兒延遲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。我們於2009年起將兒童健康手冊中大便卡不正常顏色由三色增為六色，大便卡提昇為九色大便卡，及於2011年起建立新直接/總膽紅素微量檢驗法，期望減少誤認大便顏色的情形及提升早期精確診斷及檢驗的便利性、家長接受度，降低對嬰兒的侵略性。然而目前多數家長及醫護人員對延遲性黃疸嬰兒同時檢驗直接及總膽紅素的觀念仍認知不足；若能使病童在出生後及早發現及診斷，接受葛西氏手術，能顯著地改善這些病童的預後情形。目標：探討以全國嬰兒大便顏色卡及新直接/總膽紅素微量檢驗法篩檢嬰兒延遲性黃疸，鑑別母乳哺育黃疸與膽汁滯留黃疸，提升早期診斷膽道閉鎖，減少肝臟功能受損情形，早期施行葛西手術，提昇原肝存活率，及減少換肝的機率。研究方法： 1. 探討及調查已可施行微量檢測之經驗與參與提升嬰兒延遲性黃疸鑑別診斷會議之醫院，瞭解該執行現況或困難之處(包括儀器、耗材相關成本及技術、人力分析等)，協助改善及克服微量檢測困難之情形，以提供政策參考。2.立意取樣調查全台各年度於不同地區各層級醫院的醫師與護理人員，對於九色嬰兒大便卡的執行現況、成效、困難及改進建議。3. 在台灣全體小兒腸胃科醫師的協助下，將持續維持台灣膽道閉鎖通報機制，收集全台通報的膽道閉鎖個案資料，長期追蹤病童預後情形，暸解個案黃疸情形、大便顏色是否有變化以及是否接受肝臟移植手術；分析國內嬰兒肝膽疾病之發生率、接受診治之相關統計(如：接受手術天數與比率等)，及追蹤後續存活率、換肝等資訊之相關性，期望提升早期發現大便顏色異常、早期診斷及手術，減少肝臟功能受損情形，及減少換肝的機率。4. 維持嬰兒大便卡諮詢專線(02-2382-0886)，協助嬰兒照顧者對嬰兒大便顏色及黃疸問題相關的及早就醫及異常大便顏色通報。5. 持續將新微量檢測法及全國嬰兒大便顏色卡，以101年專家會議中得到共識擬出提升嬰兒延遲性黃疸鑑別診斷之簡報教材，針對不同的重要對象，提供適當的簡報教材，推廣至各醫學會及全國醫療院所，各年度於不同地區，每年至少2場，期望以極少的血量與精確的方法檢測直接/總膽紅素，與透過簡單觀察大便顏色，鑑別母乳哺育黃疸與膽汁滯流黃疸，精確鑑別是否為膽道閉鎖，進而早期發現與治療。6. 提升醫療機構以「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，加強教育與落實嬰兒大便顏色篩檢工作，期望逐年提升參與線上登錄作業系統之篩檢通報率，及時掌握大便顏色異常個案，給予輔導或轉介；鼓勵新生兒父母在嬰兒滿30天大時至健兒門診施打B肝疫苗第二劑時，帶嬰兒大便回到醫療院所，主動給醫護人員檢視，同時教育醫護人員務必詢問嬰兒大便顏色，並將大便顏色篩檢結果上網登錄。<br> Abstract: Background：Neonatal jaundice is a common problem in infancy. Recently due the active promotion of breast feeding by the Department of Health, breast feeding rate in infants is markedly increased. Consequently, prolonged jaundice beyond 2 to 4 weeks of life is quite common. Biliary atresia is the most common cause of extra-hepatic cholestasis in infancy, and is the leading cause of liver disease death in children. Although part of the prolonged jaundice in infancy is caused by cholestasis, it is often unrecognized and mixed up with breast feeding jaundice, thus delays the optimal treatment time leading to poor outcome. We therefore designed a new nine colored stool card, in which the abnormal stool colors were increased from three to six, and also established a new direct / total bilirubin micro-method, in order to enhance the recognition and acceptance of the caretakers, the convenience and availability of the lab method, thus early accurate diagnosis and timely management . However, currently these are still not well known by the medical personnel and the care takers, thus needs further promotion. Aims：Using the new nine-colored infant stool color card and a new direct / total bilirubin of micro-method for the screening of cholestasis among infants with prolonged jaundice, in order to improve the early diagnosis and earlier Kasai operation for biliary atresia, hopefully to reduce the liver damage, to promote the native liver survival rates, and to reduce the need of liver transplantation.Methods：1.Survey and analyze the experience of the hospitals which can conduct micro-method to detect direct/total bilirubin, to understand the current status and the difficulties (including the machine, cost of consumables, technique, and man power, etc.)2.Purposive sampling among doctors and nursing personnel from hospitals of different levels and locations in Taiwan, regarding the current status, effect, difficulties and suggestions to the 9-colored infant stool card during each study year.3.Maintaining the case reporting system for biliary atresia, under the assistance of all pediatric gastroenterologists in Taiwan, collecting the patient information, including the stool color changes, information about treatment (e.g. age and rate of Kasai operation), the outcome during long term follow-up, with or without liver transplantation; analyzing the incidence of biliary atresia, etc. Hoping to promote early detection of abnormal stool color, early diagnosis, and surgery, to reduce liver injury and the need of liver transplantation.4.Maintaining the consultation hotline (02-23820886), to help the caretakers properly managing infants with suspected abnormal stool colors and prolonged jaundice.5.Making presentation or educational materials for each different medical profession, based on the concensus from 2012’s expert meeting, regarding to the new micro-method to detect direct/total bilirubin and the infant stool color card, to promote the knowledge of members in each related medical societies and hospitals in Taiwan. Organizing at least three related conferences in each study year at different regions in Taiwan, to enhance the concept of using direct/total bilirubin check-up and stool color card among medical personnel, in order to early detect and treat infants with biliary atresia. 6.Promoting the online reporting rate of infant stool color through using the “immunization online reporting system”, which can enhance the education and the screening of the infant stool color. Hoping that the participation rate of online registration of stool color can be increased year by year, to timely grasp the message of abnormal cases in order to help them.膽道閉鎖九色嬰兒大便卡葛西手術新微量檢測法直接及總膽紅素性別分析Biliary atresia9-colored stool color cardKasai operationnew micro-methoddirect / total bilirubin