Risky Drinking by Women of Child-Bearing Age: Trends and Implications
Courtney R. Green, PhDManager of Research DevelopmentCanada FASD Research [email protected]
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 drinkingGerald Thomas
Preventing FASD and promoting women’s healthNancy Poole
FASD represents a constellation of adverse effects resulting from prenatal exposure to alcohol.
Prenatal alcohol exposure Can affect the faceCan cause birth defectsCan affect the brain (structure and function)
Behaviour
Fetal Alcohol Spectrum Disorder (FASD)
CMAJ, 1981CMAJ, 1981
Alcohol affects every area of the brain
Brain stem Cerebellum Limbic system Cerebrum (left
temporal lobe) Frontal lobes Multiple locations Whole brain
Regulation of stateMotor Skills coordination
/balanceAttentionSpeech and language
Executive functioningLearning, memory, cognitionAdaptive 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 - Neuroanatomy/Neurophysiology– Cognition - Language– Academic Achievement - Memory– Attention - Adaptive behaviour, social skills
and social communication– Executive Function - 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.