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

Courtney R. Green, PhDManager of Research DevelopmentCanada FASD Research Networkcourtney.green@canfasd.ca

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

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 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.