Factors Related to Surgery for Biliary Atresia After Implementing the Infant Stool Color Card Screening

研究背景及目的：膽道閉鎖是兒童肝臟疾病最常見的死亡原因，早期診斷膽道閉鎖，早期接受葛西手術，對其長期存活率有重大影響。台灣於西元2004年將嬰兒顏色大便卡放入兒童健康手冊，促使膽道閉鎖病童在出生六十天內接受葛西手術的比率提升，獲得較佳的膽汁流通與長期存活率。本研究目的為探討台灣西元2004年起實行嬰兒大便卡後，影響膽道閉鎖兒接受手術之相關因素。 研究方法：採橫斷式觀察性研究設計，採立意取樣法，於2010年7月1日至2010年10月31日，依據財團法人兒童肝膽疾病防治基金會所登錄資料，選取西元2004年起至2009年出生，接受葛西手術膽道閉鎖兒之母親為研究對象，將研究對象分成兩組，一組為膽道閉鎖兒出生六十天內接受葛西手術組共收案52人，另一組為出生大於六十天接受葛西手術組共收案26人，利用結構式問卷進行資料收集，使用套裝軟體SPSS 17.0 for Windows及R軟體進行描述性統計及影響因素分析。 研究結果： 1、比較兩組膽道閉鎖兒基本屬性之差異：性別(p=0.037)、出生四十天內有無發現異常大便(p=0.000)、發現異常大便顏色(p=0.000)、第一次發現不正常而就醫的年紀(p=0.000)、第一次住院作膽道閉鎖檢查的年紀(p=0.000)，具有統計顯著差異；兩組膽道閉鎖兒母親基本屬性同質性高。 2、比較兩組膽道閉鎖兒母親之嬰兒大便卡篩檢流程經歷差異：醫護人員是否提供不正常黃疸相關指導(p=0.037)、是否帶您孩兒大便給醫護人員看(p=0.042)，具有統計顯著的差異。 3、比較膽道閉鎖兒母親自信程度及相關護理指導認知能力與滿意度差異：大於六十天手術組在自信程度(p=0.001)、認知能力(p=0.020)、滿意度(p=0.000)得分較六十天內手術組低。 4、實施嬰兒大便卡篩檢後，預測膽道閉鎖兒出生六十天內能接受葛西手術因子包括：男嬰(p=0.015)、膽道閉鎖兒出生四十天內有發現異常大便顏色(p=0.033)、膽道閉鎖兒之母親知道嬰兒正常黃疸應該不超過兩星期(p=0.034)、有足夠信心尋找有關大便顏色異常醫療諮詢(p=0.003)、滿意醫護人員提供的嬰兒大便卡相關指導(p=0.026)。而預測膽道閉鎖兒出生大於六十天才接受葛西手術因子包括：膽道閉鎖兒第一次作膽道閉鎖檢查年紀愈大(p=0.013)、家庭結構為小家庭及單親家庭(p=0.018)、膽道閉鎖兒之母親自認有足夠信心判斷嬰兒大便異常顏色（p=0.036)。 結論:研究結果提供醫療團隊建構更良好且完整的嬰兒大便卡篩檢流程，同時建議財團法人兒童肝膽疾病防治基金之大便卡諮詢中心，可與全省公共衛生醫護人員共同合作，定期針對一般民眾及基層院所(包括:婦幼醫院、作月子中心、診所托嬰中心)舉辦嬰兒大便卡相關指導講座，提升醫護人員及一般民眾嬰兒大便卡相關知識，落實嬰兒大便卡知識普及性。同時加強臨床護理人員，對於新生兒家屬需加強提供完整的嬰兒大便卡及不正常黃疸護理相關指導，幫助未來膽道閉鎖兒獲得更良好的治療品質。Background and Purpose: Biliary atresia (BA) is the childhood liver disease with the highest mortality rate in Taiwan. Early detection and treatment by Kasai portoenterostomy has been shown to improve chances of long-term survival significantly. Taiwan’s introduction of the infant stool color card into the national Child Healthcare Handbook (CHH) in 2004 has effectively raised the ratio of BA infants receiving a Kasai portoenterostomy within the critical sixty-days of life period, thus increasing the ratio of infants attaining critical bile circulation and surviving long-term. With the stool color card now a standard item on the CHH, this study explores factors that influence mothers’ decisions to request biliary atresia surgery for their BA infants. Research method: Researchers conducted this study between July 1st and October 31st, 2010 using a cross-sectional observational design and purposive sampling. The sample population included mothers whose infants 1) had received a Kasai portoenterostomy, 2) were born between 2004 and 2009, and 3) were registered on the Taiwan Children Liver Foundation (TCLF) database. The researcher assigned recruited subjects into one of two groups. The first included the 52 subjects whose children had received a Kasai portoenterostomy within sixty days of life; The second included the 26 whose children received the operation after sixty days of life. Data was collected using a structured questionnaire. Descriptive and influencing factor analyses were performed using SPSS 17.0 for Windows and R software. Results: 1. This study identified significant differences between the two groups in terms of the following BA infant characteristic variables: 1) gender (p=0.037); 2) identification of abnormal stool color within forty days of birth (p=0.000); 3) identification of abnormal stool color (p=0.000)); 4) age at initial identification of abnormal stool color and medical referral (p=0.000); and 5) age at time of first inpatient BA examination (p=0.000). There was a high degree of homogeneity between the two groups in terms of examined attributes. 2. This study identified significant differences between the two groups in terms of the following aspects of subject mothers’ infant stool color card experiences: 1) medical staff provision of incorrect guidance / information regarding jaundice (p=0.037) and 2) mother provision of infant stool sample to medical staff (p=0.042). 3. Intergroup differences in terms of mothers’ confidence (p=0.001) and acceptance (p=0.020) of/satisfaction (p=0.000) with nursing guidance: Subjects in the over 60-day group recorded mean scores for self-confidence, acceptance and satisfaction that were lower than their within 60-day group peers. 4. Identified positive predictive factors related to a BA infant receiving a Kasai portoenterostomy during the first sixty days of life included: 1) being male (p=0.015); 2) abnormal stool color card results received during first forty days of life (p=0.033); 3) BA mother awareness that infant jaundice is normally resolved within two weeks (p=0.034); 4) willing and able to self-research medical information on abnormal stool color (p=0.002); and 5) satisfaction with stool color card information and guidance provided by medical staff (p=0.026). Identified positive predictive factors related to a BA infant receiving the procedure after the first sixty days of life included: 1) relatively advanced infant age at first stool color card test (p=0.013); 2) small or single-parent family (p=0.018); and 3) BA mother feels sufficiently confident to self-diagnose stool color card results (p=0.036). Conclusions: Study findings can be applied to help medical teams implement more effective and comprehensive infant stool color card procedures. This study recommends the creation of a TCLF Stool Color Card Information Center responsible to work with public healthcare staff nationwide to conduct regular infant stool color card education at grassroots level healthcare stations and medical facilities such as mother and child hospitals, post-partum care centers, infant care centers and so on. Such would significantly enhance awareness and understanding amongst healthcare staff and the general public about stool color cards as well as help ensure clinical nurses deliver appropriate and proper guidance to the parents of newborn infants on the stool color card and abnormal jaundice care. The expected result is better overall medical care for infants with biliary atresia. Keywords: infant stool color card, screening, biliary atresia, Kasai portoenterostom