Grant: Operating Grant

Biliary Atresia (BA) is the leading cause of death from liver disease in the pediatric population. Newborns with BA develop jaundice and pale stools in the first weeks of life. Delay in the diagnosis of BA is the single most important factor influencing its outcome. In Canada, 50% of infants who are diagnosed and treated within one month of age survive long term with their own native liver without needing a liver transplant(LT). In contrast,<20% of BA infants diagnosed after 3 months of age will survive with their own liver,with 85% of cases dying by age 2 unless they receive a LT. Delayed diagnosis of BA is a worldwide problem because of difficulties in differentiating BA from other benign forms of prolonged newborn jaundice. In Taiwan,introduction of a universal BA screening system using an infant stool colour card to detect pale stools,led to earlier diagnosis and treatment of BA. The aim of this study is to assess the optimal and most cost-effective way to introduce this home based infant stool colour card program in Canada. In phase I of the study, all mothers discharged from the maternity unit at BC Womens hospital will be asked to examine the colour of their newborn's stool at 4 weeks of age,assign a colour grade to the stool card and return the card to the study centre. Stool colour cards will also be sent to the family physician who, by the routine 2 month visit, will verify whether the card was completed and returned. The rate of card return,and reasons for delay or non return will be evaluated to determine the optimal way to achieve high card return rate. In study phase II, the stool card program will be launched in Montreal and Prince George to evaluate its return rate in other urban and rural Canadian cities. A model to predict program cost will be developed. The results of this study will provide the basis to initiate a cost-effective National stool colour card program that aims to ensure timely diagnosis for BA and better outcome for Canadian infants.