Risky Drinking by Women of Child-Bearing Age: Trends and Implications

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 For 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. Fetal Alcohol Spectrum Disorder (FASD) 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 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 • 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. • 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

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.