1 Stimulating Systems Change for Fetal Alcohol Spectrum Disorder (FASD) Canadian Public Health Association Conference June 2, 2008

2 Stimulating Systems Change for Fetal alcohol spectrum disorder (FASD)? Overview of Presentation  What is FASD?  Why be concerned about FASD?  Vision/Goal  Steps necessary to achieve the goal  Interventions  Impact

3 What is fetal alcohol spectrum disorder (FASD)?  FASD is a general term that describes the range of disabilities that may affect a person if the birth mother drank alcohol while pregnant  Possible diagnoses  Fetal Alcohol Syndrome (FAS)  Partial FAS (pFAS)  Alcohol-related Neuro-developmental disorders (ARND)  Alcohol-related Birth defects (ARBD)

4 What is fetal alcohol spectrum disorder (FASD)?  Impact of alcohol varies with  Timing during the pregnancy  Amount consumed  Frequency of consumption  Pattern in which it is consumed  Health status of pregnant woman  Genetic background of pregnant woman  Alcohol crosses the placenta but fetus can’t metabolize it  Collects in the amniotic fluid and maternal and infant blood  Impacts cell differentiation, migration and growth

5 What is fetal alcohol spectrum disorder (FASD)? Source: Childbirth Graphics

6 Why be concerned about FASD?  FASD is a serious public health, social and economic issue in Canada  Leading cause of congenital brain injury and developmental disability  Estimated incidence is 1%  More than affected 3000 babies born annually  Over 300,000 people living with FASD in Canada  Economic cost over $24,000 annually per person aged 0 to 21 (total of over $571 million annually)  Social costs are high (17% of children in-care, Manitoba)  Health costs are high

7 Who is at-risk?  All women who consume alcohol, are sexually active and do not use reliable contraception  Most women stop once they know they are pregnant  13.9% of women reported drinking during their pregnancy (CCHS)  Study of infant meconium showed 3.7% drank significant amounts during the last trimester

8 What are the problems?  No Canadian incidence and prevalence data  No consistent advice to pregnant women from health care providers (40% health care providers discuss risk of alcohol use during pregnancy)  Lack of confirmed maternal alcohol consumption  Lack of consistent prevention activities  Lack of consistent diagnosis  Lack of diagnostic capacity

9 What is the vision?  Future alcohol affected births are prevented  Outcomes are improved for those already affected  Canadian incidence, prevalence and cost data will be available

10 Prevent FASD Improve Outcomes Canadian Incidence Data Diagnostic Guides Common Data Collection & Reporting Consistent Diagnosis Common Diagnostic Tools Confirmed Maternal Alcohol Use Early Identification & Diagnosis Consistent Advice & Intervention Training Effective Screening & Counselling Guidelines for Screening & Counselling Women & Data Recording Consistent Screening Counselling & Recording

11 What has been done?  Facilitate development of Canadian diagnostic guidelines (CMAJ March 2005)  Survey of health care provider knowledge, attitudes and practices (2004)  Facilitate consensus re: screening pregnant women and data recording (2007)  Facilitate training of trainers for health care providers (2007)  Facilitate refinement and revision of diagnostic guidelines (2008)

12 FASD Initiative a Prevention Screening SOGC, PRIMA, MD-CME Prevention Intervention Identification / Screening Screening Tools Diagnosis Revisions, Training, Tools Intervention / Management Evaluation Incidence / Prevalence / Cost Evidence Base for Decision Making / Knowledge Exchange Family Person Neighbourhood Community Municipality Region Province / Territory Pan-Canadian

13 FASD Initiative Policy, Program & Practice Development Building the evidence base for decisions  Who needs to make decisions?  What types of decisions are needed?  What information do we need?  At what level?  Whom do we need to convince?  What do we need to do next?