2011-01-012024-05-14https://scholars.lib.ntu.edu.tw/handle/123456789/660924摘要：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。雖有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。自2004年起，開始推廣全國以嬰兒大便卡早期篩檢膽道閉鎖。研發設計六色大便顏色辨識卡，提供醫護人員以及新生兒照顧者做嬰兒大便顏色比對，六色大便卡實施多年來，確實讓國內膽道閉鎖兒童提早被發現以及篩檢出來，同時國內此症兒童的早期開刀率也有顯著的提昇。國內膽道閉鎖早期(出生60天以前)開刀率雖然與尚未推行大便卡前比較，是進步許多，但仍有大約三成的膽道閉鎖兒無法在出生後60天內施行葛西手術，實在讓人遺憾。2006年3月，在疾病管制局的協助下將嬰兒大便顏色篩檢與預防注射系統結合，加強教育與落實嬰兒大便顏色篩檢工作。部份膽道閉鎖家長反應寶寶的大便顏色其實是介於正常與不正常間，在卡片上找不到相似顏色，比對顏色上感到困惑，多誤以為是正常，所以無法提早就醫治療。因此我們在2008年底已將不正常的顏色增為六色，將大便卡提昇為九色大便卡，期望能讓家長減少誤認大便顏色的情形，以提昇偵測異常大便顏色。我們將長期追蹤膽道閉鎖兒童預後，希望因早期發現大便顏色異常並早期診治可以減少肝臟功能受損情形。早期葛西手術希望能提昇原肝存活率，及減少換肝的機率。膽汁滯留症可分為肝內型及肝外型，肝外膽汁滯留症之中以膽道閉鎖最為多見，也是兒童最常見的肝病致死原因，及換肝最主要的原因。要分辨嬰兒延長性黃疸是因為母乳哺育或是膽汁滯留症所引起，最正確的方法是同時檢測血中直接膽紅素及總膽紅素值。目前大部分的醫院檢驗直接膽紅素必須抽取嬰兒靜脈血，這是家長較難接受的，於2009年開始建立直接膽紅素的微量檢驗法，以增加家長接受度，及檢驗的便利性。本計畫為三年計畫，本年度為第三年計畫，本年度計畫將推動下列重點: 1.以全國出生嬰兒為對象，將新設計及修改的九色嬰兒大便卡放入兒童健康手冊中，以促進家長早期發現異常大便顏色，並提供醫事人員與機構嬰兒九色大便卡之教育推廣。 2.監測實施九色嬰兒大便卡後全國膽道閉鎖發生率及早期篩檢成效。3.長期追蹤膽道閉鎖兒，以暸解民國2002-2007年出生之膽道閉鎖兒診療現況，長期存活率及換肝率。4.提高各級醫療機構運用「預防注射網路通報系統」大便顏色篩檢膽道閉鎖及膽汁滯留症；希望地區醫院加入「預防注射網路通報系統」參與篩檢通報在本年度達90％，且積極提升篩檢率與通報準確度。5.推廣直接膽紅素及總膽紅素同時偵測，尤其著重以微量檢測法檢測新生兒血中直接及總膽紅素值，鑑別母乳哺育黃疸與膽汁滯留症。目前已建置成功，本年度擬將此方法推廣至南部地區之醫療院所。對於因機器限制無法執行微量檢測的醫院加強推廣以傳統法做直接膽紅素檢驗。叁、計畫內容一、研究主旨： 希望藉由下列研究，以達成早期發現膽道閉鎖、早期診斷，並提升早期施行葛西手術成果(一)瞭解醫護人員及家長對於六色大便卡與九色大便卡的看法與比 較，並推廣嬰兒九色大便卡，以達成早期診斷、早期治療。(二)探討實施九色嬰兒大便卡之後早期發現異常顏色大便天數、膽道閉鎖早期診斷率及早期葛西手術率。(三)追蹤膽道閉鎖兒童之長期原肝存活率與總存活率，比較使用嬰兒大便卡前後之差異。(四)推廣各級醫療院所以「預防注射網路通報系統」，網路通報異常大便顏色以篩檢膽道閉鎖及膽汁滯留症。(五)推廣直接膽紅素與總膽紅素同時測定，尤其著重微量檢測法之推廣，以早期鑑別嬰兒母乳哺育黃疸與膽汁滯留性黃疸。三年計畫全程總目標1.完成兒童建康手冊上新的九色嬰兒大便卡之推廣與評估，提供醫事人員與機構嬰兒九色大便卡之推廣，舉辦推廣教育課程，每年至少2場。同時藉由問卷調查瞭解家長與醫護人員對於新的九色大便卡的意見，以及與舊的六色大便卡之比較。並評估九色嬰兒大便卡篩檢膽道閉鎖之敏感性、特異性和陽性預測值與其篩檢成效。2.監測全國膽道閉鎖發生率及早期篩檢成效，達成早期發現、早期診斷並提前葛西手術時間及預後成果，比較使用大便卡前後差異。3.推廣「預防注射網路通報系統」中之嬰兒大便卡篩檢網路登錄系統，向地區及區域醫院尚未參與以「預防注射網路通報系統」嬰兒大便顏色篩檢網路登錄系統者了解其困難，並推廣其參與「預防注射網路通報系統」網路登錄篩檢嬰兒大便顏色以達到預期目標。由於這些過去未能參與之醫院困難度必定很高，將盡力推動，但因無強制性，必定有無法配合者。4.長程追蹤自2002年登錄個案至2010年底出生之膽道閉鎖個案，並瞭解20002-2009年出生者長期原肝存活率、換肝率及總存活率。5.推廣直接膽紅素及總膽紅素同時測定，尤其著重微量檢測法之推廣，推廣延長性黃疸嬰兒應該抽直接及總膽紅素的觀念，使鑑別嬰兒母乳哺育與膽汁滯留症的確認工作容易被家長接受。並且將微量檢測方法推廣至全國各地區，在沒有辦法做微量檢測的醫院，則使用傳統的抽血檢驗法。<br> Abstract: Neonatal jaundice is a common problem in infancy. After activepromotion of breast feeding by our Department of Health and the society, the infant breast feeding rate has been increased remarkably. Therefore prolonged jaundice exceeding two or even four weeks of life becomes more and more common. Part of those infants with prolonged jaundice are due to cholestasis, yet are often unrecognized and considered as breast feeding jaundice, missing the optimal time for treatment which may require liver transplantation early in life. Cholestasis can be divided into intra- and extra-hepatic origin. Biliary atresia is the most common cause of extra-hepatic cholestasis in infancy, the leading cause of liver death in children, and the main cause of liver transplantation in children. Since 2004, a national screening program to enhance early diagnosis of biliary atresia has been started. A six-colored stool color card was designed for the medical personnel and care-takers of the neonates to compare with the stool color of their infants. This program has enhanced the early diagnosis and treatment of biliary atresia. In spite of the improvement of the early surgery (before 60 days of life) rate of biliary atersia after launch of the stool color program, still around 30% of the patients with biliary atresia could not be operated before 60 days of life. In March 2006, under the assistance of Taiwan CDC, linking of the stool color card screening program with the online infant vaccination registry system enforced the educational and screening effects of the stool color card program. Part of the parents of biliary atresia felt that the stool colors of their infants were between the normal and abnormal stool colors on the 6-colored infant stool color card. They could not find the color on the card fitting their infants stool color. This made them feeling puzzled and interpreted the abnormal stool color as normal, thus delayed the timing for seeking medical aid. We therefore increased the number of abnormal stool colors on the stool card up to 6 colors, making the new stool color card to be totally 9-colored. We hope this will reduce the mis-interpretation rate by the caretakers, and to promote the early detection of abnormal stool color in infants.We will long-term follow the outcome of infants with biliaryatresia, in order to monitor whether the stool color screening program will enhance the early treatment and reduce the liver damage. Early Kasai operation for biliary atresia patients hopefully will improve their survival with native liver, and reduce the chance of liver transplantation in children.In order to differentiate between breast feeding jaundice and cholestasis in infancy, the most accurate method is to check the levels of direct and the total bilirubin. Currently most hospitals need to take the venous blood for checking those two items. This is not widely acceptable by many parents. Staring from 2009, we developed a new micro methods to check direct and total bilirubin by taking the heel blood of the infants with less blood volume, to increase the acceptability of the care takers. This project is a three-year project, and this year’s project is thethird year-project. The following will be conducted in this project : 1.Taking the newborns of the whole Taiwan as the study subjects, a new 9-colored stool color cared is put into the children health booklet to enhance the early detection of abnormal stool color, and to provide education and promotion for medical personnel.2.Monitor the incidence and the effect of early screening of biliary atresia after the conduction of the 9-colored stool color card program. 3.Long term follow-up the infants of biliary atersia born between 2002 and 2007 to understand the status of their diagnosis and treatment, the long term survival, and the rate of liver transplantation.4.Promote the use of the “online infant vaccination registry system” to report the stool color of infants by hospitals, hoping that 90% of the hospitals will participate this online reporting system for the infant stool color. 5.Promote checking direct and total bilirubin levels simultaneously in infants with prolonged jaundice, particularly emphasize the use of micro-method. We have established a plausible micro-method, and will promote it to the Southern part of Taiwan. Due to the limitation of the machine, for those hospitals which can not conduct micro-method for direct and total bilirubin, we will promote the traditional venous blood method to check direct and total bilirubin.新生兒黃疸膽汁滯留症膽道閉鎖嬰兒大便卡微量檢測法直接膽紅素