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Stimulating Systems Change for Fetal Alcohol Spectrum Disorder (FASD)

Canadian Public Health Association ConferenceJune 2, 2008

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Stimulating Systems Change for Fetal alcohol spectrum disorder (FASD)?

Overview of Presentation What is FASD? Why be concerned about FASD? Vision/Goal Steps necessary to achieve the goal Interventions Impact

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What is fetal alcohol spectrum disorder (FASD)?

FASD is a general term that describes the range of disabilities that may affect a person if the birth mother drank alcohol while pregnant

Possible diagnoses Fetal Alcohol Syndrome (FAS) Partial FAS (pFAS) Alcohol-related Neuro-developmental disorders

(ARND) Alcohol-related Birth defects (ARBD)

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What is fetal alcohol spectrum disorder (FASD)?

Impact of alcohol varies with Timing during the pregnancy Amount consumed Frequency of consumption Pattern in which it is consumed Health status of pregnant woman Genetic background of pregnant woman

Alcohol crosses the placenta but fetus can’t metabolize it Collects in the amniotic fluid and maternal and infant

blood Impacts cell differentiation, migration and growth

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What is fetal alcohol spectrum disorder (FASD)?

Source: Childbirth Graphics

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Why be concerned about FASD?

FASD is a serious public health, social and economic issue in Canada

Leading cause of congenital brain injury and developmental disability

Estimated incidence is 1% More than affected 3000 babies born annually Over 300,000 people living with FASD in Canada Economic cost over $24,000 annually per person aged 0

to 21 (total of over $571 million annually) Social costs are high (17% of children in-care, Manitoba) Health costs are high

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Who is at-risk?

All women who consume alcohol, are sexually active and do not use reliable contraception

Most women stop once they know they are pregnant

13.9% of women reported drinking during their pregnancy (CCHS)

Study of infant meconium showed 3.7% drank significant amounts during the last trimester

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What are the problems?

No Canadian incidence and prevalence data No consistent advice to pregnant women from

health care providers (40% health care providers discuss risk of alcohol use during pregnancy)

Lack of confirmed maternal alcohol consumption Lack of consistent prevention activities Lack of consistent diagnosis Lack of diagnostic capacity

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What is the vision?

Future alcohol affected births are prevented Outcomes are improved for those already affected Canadian incidence, prevalence and cost data will

be available

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Prevent FASD

Improve Outcomes

Canadian Incidence Data

Diagnostic Guides

Common Data Collection & Reporting

Consistent Diagnosis

Common Diagnostic Tools

Confirmed Maternal Alcohol Use

Early Identification & Diagnosis

Consistent Advice & Intervention

Training Effective Screening & Counselling

Guidelines for Screening &

Counselling Women & Data Recording

Consistent Screening Counselling & Recording

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What has been done?

Facilitate development of Canadian diagnostic guidelines (CMAJ March 2005)

Survey of health care provider knowledge, attitudes and practices (2004)

Facilitate consensus re: screening pregnant women and data recording (2007)

Facilitate training of trainers for health care providers (2007)

Facilitate refinement and revision of diagnostic guidelines (2008)

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FASD Initiative

aPrevention Screening

SOGC, PRIMA, MD-CME

Prevention Intervention

Identification / Screening

Screening Tools

Diagnosis

Revisions, Training, Tools

Intervention / Management

Evaluation

Incidence / Prevalence / Cost

Evidence Base for Decision Making / Knowledge Exchange

Family

Person

Neighbourhood

CommunityMunicipality

RegionProvince / Territory

Pan-Canadian

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FASD Initiative

Policy, Program & Practice Development Building the evidence base for decisions Who needs to make decisions? What types of decisions are needed? What information do we need? At what level? Whom do we need to convince? What do we need to do next?