Risky Drinking by Women of Child-Bearing Age: Trends and Implications Courtney R. Green, PhD Manager of Research Development Canada FASD Research Network [email protected] Outline 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 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 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 Critical Periods of Fetal Development 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 Common behaviours associated with FASD Hyperactivity Poor co-ordination/motor control Developmental delay Distractible Learning problems Memory problems Impulsivity Socially engaging 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) 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. 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 Cognition Academic Achievement Attention – Executive Function - Neuroanatomy/Neurophysiology - Language - Memory - Adaptive behaviour, social skills and social communication - Anxiety, Depression and Mood Dysregulation 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. 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) 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) 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). 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. 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. 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 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 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 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 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. 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.