A Model for Measuring Prevalence of Fetal Alcohol Spectrum Disorder in Canada
Fetal Alcohol Spectrum Disorder (FASD) is the leading cause of developmental disabilities in Canada and is an umbrella term describing the range of effects associated with alcohol use during pregnancy. Currently, we do not know exactly how many Canadians are living with FASD, but we estimate 350,000 and that 3,000-4,000 babies with FASD are born every year. The costs for health, mental health, social services, education, and productivity losses are estimated to be a staggering $5.3 billion per year. An accurate measure of the number of Canadians living with FASD (the “prevalence”) is important for many reasons, including justification for FASD programming, better planning for use of FASD resources, identifying those at risk for FASD and alcohol consumption during pregnancy, determining trends, calculating costs and measuring effectiveness of prevention, and intervention efforts. Determining the prevalence of FASD will take a national coordinated and collaborative effort across jurisdictions and sectors. The objectives of this proposal are to take the first steps toward developing a plan of action for measuring FASD prevalence in Canada by performing an environment scan to: identify the existing data sources, databases and the data fields that are collected; gather information about where information about a prenatal-alcohol related diagnosis is captured, capability of the systems to link to other databases/systems, standardized information that is captured and the current capacity of Canada to accurately measure FASD prevalence; and to explore ways of working with or expanding existing systems to gather information/data about FASD. The results will be used as a foundation to develop recommendations to measure FASD prevalence in Canada.