1. Risky Drinking by Women of Child-Bearing Age: Trends and Implications Courtney R. Green, PhD Manager of Research Development Canada FASD Research Network courtney.green@canfasd.ca

2. Outline F OR THIS SECTION  FASD –Effects of Prenatal Alcohol Exposure –Prevalence, Incidence, Costs  What we know and need to know  Universal FASData Form Project  Relevance to Public Health For this Symposium  Understanding FASD Courtney Green  Trends and patterns of women’s drinking Gerald Thomas  Preventing FASD and promoting women’s health Nancy Poole

3. FASD represents a constellation of adverse effects resulting from prenatal exposure to alcohol. Prenatal alcohol exposure  Can affect the face  Can cause birth defects  Can affect the brain (structure and function)  Behaviour Fetal Alcohol Spectrum Disorder (FASD) CMAJ, 1981

4. Critical Periods of Fetal Development

5. Alcohol affects every area of the brain  Brain stem  Cerebellum  Limbic system  Cerebrum (left temporal lobe)  Frontal lobes  Multiple locations  Whole brain Regulation of state Motor Skills coordination /balance Attention Speech and language Executive functioning Learning, memory, cognition Adaptive skills and applications Clarren, 2010

6. Common behaviours associated with FASD  Hyperactivity  Poor co-ordination/motor control  Developmental delay  Distractible  Learning problems  Memory problems  Impulsivity  Socially engaging

7. Why Diagnose FASD?  Key to access to supports and services  Diagnosis before age 6 is a critical factor for improving outcome  Must be done by a trained multidisciplinary team –Physician –Psychologist –Speech-Language Pathologist –Occupational Therapist –Others (mentor, addiction worker, social worker, psychiatrist, etc)

8. FASD  FASD has been traditionally used an identification and not a diagnosis  FASD is an umbrella term that has included: –Fetal Alcohol Syndrome (FAS) –partial FAS (pFAS) –Alcohol-related Neurodevelopmental Disorder (ARND) –Alcohol-Related Birth Defects (ARBD)  These categories differ based on the presence/absence of facial features and confirmed prenatal alcohol exposure  FASD: Canadian Guidelines for Diagnosis were published in 2005.

9. Diagnosis: 2014 Revisions  Nomenclature –FASD with sentinel facial features –FASD with sentinel facial features, provisional –FASD without sentinel facial features  Growth Restriction: No longer required  Neurodevelopmental assessment: changes/clarifications to the domains of interest (10 domains) –Motor Skills- Neuroanatomy/Neurophysiology –Cognition- Language –Academic Achievement- Memory –Attention- Adaptive behaviour, social skills and social communication –Executive Function- Anxiety, Depression and Mood Dysregulation

10. Common myths  One or two drinks a week when pregnant are harmless  Mothers of children with FASD chose to drink during pregnancy and did not care if they damaged their children  Behavioural problems linked to FASD are the result of poor parenting.  Children affected by FASD will grow out of it as they age  FASD is an Aboriginal issue.  Children with FASD can’t learn, making it a hopeless diagnosis/condition  Findings are mixed as to the impact of low levels of consumption – alcohol is a teratogen  Continued drinking at risky levels in pregnancy is associated with serious histories of trauma and related health and social challenges  Behaviour problems are related to brain injury, with life long implications  Women of all races and income levels are vulnerable to drinking in pregnancy.  Early diagnosis can improve outcomes and maximize potential.

11. Prevalence  No National statistics –FAE/FAS Yukon: 46/1000 (Asante et al., 1985) Northwest BC: 25/1000 (Asante et al., 1985)  Prevalence of FAS is at least 2 to 7 per 1,000 in the US (May et al., 2009) –Prevalence of FASD in populations of younger school children may be as high as 2-5% in the US and some Western European countries (May et al., 2009)

12. Incidence  Canada –Manitoba: 7.2/1000 (but could be as high as 14.8/1000) (Williams et al., 1999) –Saskatchewan: 0.515/1000 for 1973-77; 0.589/1000 for 1988-92 (Habbick et al., 1996)

13. Cost of FASD  Estimated annual cost of $7.6 billion in Canada (Thanh and Jonsson, 2009). –Total direct health care cost of acute care, psychiatric care, day surgery, and emergency department services associated with FAS in Canada in 2008-2009 is ~$6.7 million (Popova et al., 2012)  At the individual level, the total adjusted annual cost associated with FASD is ~ $21,642 (Stade et al, 2009).  An FASD evaluation requires 32 to 47 hours, which costs $3,110 to $4,570 per person (Popova et al., 2013).

14. What we know  Children’s neurodevelopmental disorders are a significant issue in Canada –Effect quality of life for children and their families –Strain health, social services, education, corrections and education sectors  Children with neurodevelopmental disorders often present with patterns of abnormalities and co-occurring conditions –Influences the presenting deficits, treatment recommendations and potential outcomes.

15. What we would like to know  Specific functional deficits and/or clusters of deficits that are specific to individuals with FASD –Important for developing successful, accessible and cost-effective programs  This data is available in the diagnostic clinics, but needs to be collected succinctly using a standardized process.

16. The Universal FASData Form  CanFASD recently developed and piloted the universal FASData form for capturing data from the FASD population  Provides a structure for active communication and collaboration among all clinical programs in Canada that provide FASD diagnoses  Provides real-time information on the difficulties, challenges and needs of those who present for an FASD-related diagnosis  Captures type of diagnosis, recommendations for interventions, specifics of assessments and demographics

17. Implications for the FASDataform  Provide an accurate measure of the spectrum of functional diagnoses and actual treatment plans for FASD  Support the development of more specific and effective educational/vocational programming  Produce national prevalence data for FASD

18. Progress to date  Engaged 41 diagnostic clinics across Canada in the pilot study  Collected standardized data that was stored in a centralized database  Captured 400+ files in the complete data set

19. Findings in functional profiles  The top three functional deficits were in the areas of: –Adaptive behaviour –Executive function and abstract reasoning –Social Communication  The top clusters of functional deficits were: –Academic achievement, Executive function, Communication –Cognition, Executive function and Adaptive behaviour  The majority of individuals did not have the facial features associated with FASD but did have significant neurodevelopmental deficits

20. FASD summary  FASD is the leading known cause of preventable developmental disability among Canadians. –~9.1 per 1000 live births or 1% of the population (Health Canada 2006).  FASD is characterized by learning, behaviour and emotional problems.  FASD is a life-long disability.  Most people living with FASD do not have facial anomalies.  Early diagnosis can improve outcomes and maximize potential.  People living with FASD can live a normal life if they are well supported.

21. Importance for Public Health  FASD is a disorder that requires the attention and coordination of multiple health and allied health disciplines  Awareness of the disability and of patterns and influences on women’s drinking are important, on the part of all those working in public health  A range of mutually reinforcing alcohol awareness, health promotion, treatment and policy interventions are needed to prevent FASD and promote women’s health.