Fetal Alcohol Syndrome

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Prenatal Exposure to Alcohol An
Immeasurable Epidemic
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Revised from a presentation developed
forNursing 760SDSUDecember 2002

• Dianne Kutz, Gwenn Rosenau, Lisa Rupert and Kelly
  Wasko

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Fetal Alcohol Syndrome

• FAS
• 1973 Pattern of facial and developmental
  defects first described
• 1981 U.S. Surgeon General Issued Warning
• ALCOHOL USE IN PREGNANCY MAY HARM FETUS!

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CDC Report 1995

• 1991-1995 Four-fold increase in frequent and
  binge drinking during pregnancy
• Frequent seven or more drinks per week
• Binge five or more drinks per occasion

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CDC Report 1995

• Alcohol use of at least one drink during
  pregnancy has declined
• Frequent and binge drinking remain at high
  levels
• (MMWR, April 2002)

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CDC Report 1995

• More than 130,000 pregnant women in the U.S.
  consume alcohol at levels shown to increase risk
  of FAS/alcohol related conditions
• 1/30 women who were aware of being pregnant
  reported risk drinking

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Alcohol Related Birth Defects

• Can occur in the first 3-8 weeks of pregnancy
• Before a woman knows that she MAY be pregnant
• 1/7 women of childbearing age (18-44) who report
  NOT being pregnant report risk drinking

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Fetal Alcohol Syndrome Surveillance Network

• FASSNet
• CDC collaboration with four states Alaska,
  Arizona, Colorado, and New York
• 1995-1997 Rate of FAS 0.3-1.5 per 1,000 live
  births depending on race/ethnicity
• Alaskan Native, Native American, and black have
  highest rates

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Prevalence of FAS in the U.S.

• NOT KNOWN

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Prevalence Indeterminate

• 1979-1993 Six-fold increase in incidence of FAS
• 1993 JAMA report
• FAS leading known preventable birth defect

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Prevalence of FAS

• Rates from 0.3-2.2 per 1,000 live births (CDC)
• As many as 1,2000-8,800 babies/year with classic
  FAS
• Many more believed to be neurodevelopmentally
  affected

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COST
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Cost To Individual and Society

• Estimated annual health care costs associated
  with FAS is 2.8 billion in 1998
• Children subjected to in-utero alcohol exposure
  suffer lifelong consequences

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Indirect Costs to Children and Society

• FAS is the leading known cause of mental
  retardation and birth defects
• Clinical features
• Abnormal facial features
• Growth deficiencies
• CNS problems learning, memory, attention span,
  problem solving

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Indirect costs cont

• Terminology difficulties due to different
  expression and penetrance of damage
• Fetal Alcohol Effect (FAE) now replaced
• Alcohol-Related Neurodevelopmental Disorder
  (ARND)
• Alcohol-Related Birth Defects (ARBD)
• Institute of Medicine

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What does this mean to us?

• ARND Functional or mental impairments linked to
  perinatal alcohol exposure
• Behavioral and cognitive abnormalities including
  learning difficulties, poor school performance,
  poor impulse control, problems with math, memory,
  attention and judgment

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What does this mean to the child?

• ARND features
• Have difficulty structuring work time
• Show impaired rates of learning
• Experience poor memory
• Have trouble generalizing behaviors and
  information
• Act impulsively
• Exhibit reduced attention span
• Display fearlessness and are unresponsive to
  verbal caution

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ARND Cost to the Child

• ARND features (cont)
• Demonstrate poor social judgment
• Cannot handle money age appropriately
• Have trouble internalizing modeled behaviors
• May have differences in sensory awareness
• Language production higher than comprehension
• Show poor problem solving strategies

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ARBD What Does this Mean?

• Malformations of skeletal and major organ
  systems heart, kidney, bone, auditory system
• All of these require special attention of primary
  caregivers
• Produce lifelong problems

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Prospective Cost to Society

• Increasing cost of special education, medical
  expenses for ADD/ADHD, special needs such as
  hearing and speech difficulties
• Social misfits, increased legal problems
• Increased family violence
• Increased incidence of alcohol related expenses
  due to behavioral problems
• An endless cycle of costs

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Irreversible Conditions Which Affect Every Aspect
of an Individuals Life, Lives of His or Her
Family and Society

• 100 PREVENTABLE
• IF A WOMAN DOES NOT DRINK ALCOHOL WHEN SHE IS
  PREGNANT

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Theoretical Application

• Pendars Health Promotion Model

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Physiological Overview
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Physiological Overview

• It is thought that more than one mechanisms are
  responsible for the syndrome
• Alcohol vs. acetylaldehyde
• Malnutrition in conjunction with ethanol exposure
• Amino acid transport damage
• Vitamin /or mineral deficiency

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Physiological Overview

• Impaired glucose transport
• Slowed protein synthesis
• Ethanol-induced prostaglandin changes
• Hypoxia
• Paternal influences (sperm mutation)

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Co morbidities

• Mental health problems
• Attention disorders
• Conduct disorders
• Alcohol or drug dependence
• Depression
• Psychotic episodes

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Co morbidities

• Social problems
• Difficulty getting along with other children
• Poor relationships
• Increased chance of breaking the law
• Inappropriate sexual behaviors
• Difficulty maintaining employment and independent
  living

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Causal/Concomitant Health Implications

• Growth deficits
• CNS deficits due to anomalies of brain structure
  and function
• Varying degrees of mental retardation
• Behavioral problems

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Causal/Concomitant Implications

• Facial anomalies
• Short palpebral fissures
• Flattened nasal bridge
• Absent or elongated philtrum
• Thin upper lip

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Physiological Overview

• Theories include
• Alcohol vs. acetylaldehyde
• Malnutrition in conjunction with alcohol exposure
• Amino acid transport damage
• Vitamin /or mineral deficiency
• Impaired glucose transport

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Assessment
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Screening Instruments for Risk Drinking

• T-ACE
• T- Tolerance How many drinks does it take to
  make you feel high?
• A- Have people annoyed you by criticizing your
  drinking?
• C- Have you ever felt you ought to cut down on
  your drinking?
• E- Eye Opener Have you ever had a drink first
  thing in the morning to steady your nerves or get
  rd of a hangover?

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Screening Instruments for Risk Drinking

• T-ACE
• Test scoresgtor2 indicates a test score
• T-ACE scored highest on sensitivity and
  specificity to predict drinking during pregnancy
  as compared to MAST CAGE
• Chang (N.D.)

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Screening Instruments for Risk Drinking

• CAGE
• C- How many times have you attempted to cut down
  on your alcohol intake?
• A- Are you ever aggravated by others asking you
  about your drinking?
• G- do you ever feel guilty about your drinking?
• E- Do you ever have an eye opener to settle your
  nerve or get rid of a hangover?
• Test scores gt2 are indicative of positive risk

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Interventions for FAS
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1 Intervention

• Prevention of FAS by completely abstaining from
  alcohol use during pregnancy

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Three Prevention Strategies

• Universal warnings on alcohol labels,
  billboards, and pamphlets
• Selective target specific population (e.g.
  screen all women of childbearing age)
• Indicated target high risk women (e.g. women
  with a history of alcohol abuse during pregnancy)
• Hankin, 2002

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Prevention of FAS

• There is no known SAFE amount of alcohol
  consumption during pregnancy

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Prevention of FAS cont

• Education
• FAS prevention needs to be integrated into drug
  prevention education curriculum for all
  elementary, junior high, high schools,
  postsecondary, and adult learning centers
• Health care professionals need to educate women
  about FAS prevention
• American Academy of Pediatrics, 2000

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Prevention of FAS cont

• Screening
• Health care professionals need to screen all
  pregnant women about use of alcohol during
  pregnancy
• Motivation was found to be highly affective in
  increasing compliance to an alcohol-free pregnancy

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Strategies for FAS children

• There is no set strategy for interventions with
  FAS diagnosed children
• Suspected FAS diagnosed children should be
  evaluated by a competent health care provider at
  an early age and would include referral to
  services of the individuals with disabilities
  education act and parental support and education

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Eight Strategies for Developing Successful
Interventions

• Concrete Speak to FAS children with concrete
  terms, do not use words with double meanings
• Consistency Provide a consistent environment
  (few changes) and use similar words for key
  phrases and directions
• Repetition Often information needs to be
  re-taught several times because of short-term
  memory problems

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Eight Strategies for Developing Successful
Interventions cont

• Routine Lack of change in daily routines
  decrease anxiety and increase learning
• Simplicity Keep it short and sweet (KISS
  method), FAS children can be easily
  over-stimulated with too much information
• Specific Say exactly what you mean and give
  step by step directions

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Eight Strategies for Developing Successful
Interventions, cont

• Structure FAS children need a permanent
  foundation (structure) in order for their world
  to make sense
• Supervision Because of cognitive challenges,
  these children need constant supervision (as with
  younger children)
• Evensen Lutke
• http//www.com-over.to/FASCRC

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Outcomes Measurement
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Outcomes Measurement

• Prevention of FAS can be measured through
• Education Verbal responses to education
  provided by individual health care providers and
  educators and national campaign reactions found
  in surveys of the public

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Outcomes Measurement

• Education cont
• Study One study that surveyed the publics
  knowledge of FAS in 1985 (19,000 people) and in
  1990 (23,000 people) found an increase from 25
  to 39. The study concluded that this was due to
  national campaigns to educate the public
• Hankin, 2002

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Outcomes Measurement

• Prevention through screening
• Screening alone may be related to a reduction of
  drinking during pregnancy
• This can be measure through womens subjective
  responses to screening questions and through
  identification of women who admit to drinking
  during their pregnancy

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Outcomes Measurement

• Screening cont
• Study Randomized trial of 250 pregnant women
  considered high risk drinkers found a similar
  reduction in drinking in women who received
  education about FAS and women who were just
  screened for drinking early in their pregnancy
• Hankin, 2002

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Outcomes Measurement

• Interventions with FAS children
• Abilities of children with FAS do not improve
  over time. Therefore, early diagnoses and
  referral would benefit these children so that the
  strategies listed above could be implemented early

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Outcomes Measurement

• Interventions with FAS children cont
• Study A study found that children with FAS that
  had no interventions had symptoms that remained
  constant over time. However, children with a
  positive, supportive home environment had
  improvements in symptoms
• Weiner Morse, 1994

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Time Parameters

• As suggested in most of the studies identified,
  time parameters consist of as little as reduction
  of alcohol use in one pregnancy to a life time
  for improvement of FAS symptoms in an FAS child

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Further Research

• Most research has been focused on prevention of
  alcohol use during pregnancy, mechanisms of
  alcohol damage in pregnancy, and proving that
  alcohol causes damage in pregnancy. More
  research needs to focus on the affected children.

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Further Research

• Research on affected children
• Neuropsychological evaluations to compare FAS to
  other CNS conditions
• Studies done on ways to improve diagnoses of FAS
  by health care providers
• Testing models to be used with FAS

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Further Research

• Research on affected children cont
• Studies to find ways to distinguish FAS from
  other drug induces effects
• Conducting studies not focused on the mental
  retardation model, because of its lack of
  representation of some FAS kids
• Weiner Morse, 1994

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Resources
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Local Resources

• Volunteers of America
• Turning Point
• Birth to three programs
• Building Blocks
• Dakota Drug and Alcohol Prevention
• Parent Connection
• Alcoholics Anonymous, Al-Anon, Alateen
• http//www.alcoholicsanonymous.org

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State Resources

• South Dakota Department of Health
• http//www.state.sd.us/doh
• Department of Social Services- Child Protection
• Indian Health Services
• Dave Compton
• Division of Environmental Health Services
• 115 4th Ave SE
• Aberdeen, SD 57401

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National Resources

• National Organization on FAS
• http//www.nofas.org
• March of Dimes
• http//www.modimes.org
• Substance Abuse Mental Health Service
  Administration
• http//www.samhsa.gov
• Association of Retarded Citizens of the United
  States
• http//www.thearc.org

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National Resources

• CDC
• http//www.cdc.gov/nah/cddh/fashome.htm
• FAS Family Resource Institute
• http//www.fetalalcoholsyndrome.org

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• Alcoholics Anonymous, Al-Anon, Alateen
  http//www.alcoholicsanonymous.org
• South Dakota Department of Health
  http//www.state.sd.us/doh
• Department of Social Services- Child Protection
• Indian Health Services
• Dave Compton
• Division of Environmental Health Services
• 115 4th Ave SE
• Aberdeen, SD 57401
• National Organization on Fetal Alcohol Syndrome
  (NOFAS)
• http//www.nofas.org http//www.nofas.org/main/in
  dex2.htm
• National Center for Birth Defects and
  Developmental Disabilities http//www.cdc.gov/ncbd
  dd/fas
• Fetal Alcohol and Drug Unit at the University of
  Washington http//depts.washington.edu/fadu/
• March of Dimes http//www.modimes.org
• Substance Abuse Mental Health Service
  Administration http//www.samhsa.gov
• Association of Retarded Citizens of the United
  States http//www.thearc.org
• CDC http//www.cdc.gov/nah/cddh/fashome.htm
• FAS Family Resource Institute http//www.fetalalc
  oholsyndrome.org

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References

• American Academy of Pediatrics (2000). Fetal
  alcohol syndrome and alcohol-related
  neurodevelopmental disorders. Pediatrics, 106(2),
  358.
• Center for Disease Control. (2002, April 5).
  Alcohol use among women of childbearing age
  1991-1999. MMWR, 15(13), 273-276
• Center for Disease Control. (2002, May 24). Fetal
  alcohol syndrome Alaska, Arizona, Colorado and
  New York. 1995-1997. MMWR, 51(20), 433-445.
• Center for Disease Control (2002). Fetal alcohol
  syndrome Living with fetal alcohol syndrome.
  Retrieved November 17, 2002, from
• http//www.cdc.gov/ncbddd/fas/fassc.htm
• Ebrahim, S.H., Diekman, S.T., Floyd, L.R. (1999).
  Comparison of binge drinking among pregnant and
  non-pregnant women, United States, 1991--1995.
  American Journal of Obstetrics and Gynecology,
  180,1-7.
• Evensen, D. Lutke, J. (). 8 Keys to developing
  successful interventions for children with FAS.
  Retrieved Nov. 25, 2002 from http//ftnelsonbc.tri
  pod.ca/keysfas.html
• Goodlett, C. Horn, K. (2001). Mechanisms of
  alcohol-induced damage to the developing nervous
  system. Alcohol Research and Health,25, pp.
  175-184.
• Handmaker, N., Miller, W., Manicke, M. (1999).
  Findings of a pilot study of motivational
  interviewing with pregnant drinkers. Journal of
  Studies on Alcohol, 60(2), 285.
• Hankin, J. (2002). Fetal alcohol syndrome
  prevention research. Alcohol Research Health,
  26(1), 58.

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References Cont.

• Larkby, C. Day, N. (1997). The effects of
  prenatal alcohol exposure. Alcohol Health
  Research World, 21, pp. 192-198.
• Phillips, D., Henderson, G., Schenker, S.
  (1989). Pathogenesis of fetal alcohol syndrome
  overview with emphasis on the possible role of
  nutrition. Alcohol Health and Research World,
  13, pp. 219-228.
• Thomas, S. McElhatton, P. (2000). Fetal
  effects of maternal alcohol exposure. Journal of
  Toxicology Clinical Toxicology, 38, p.192.
• Morse, B. (1994). Intervention and the child
  with FAS. Alcohol Health
• Research World, 18(1), 67.
• National Institute of Health. Tenth Special
  Report to the U.S. Congress on Alcohol and Health
  http//www.niaaa.nih.gov/publications/publications
  .htm