preventing alcohol exposure and fetal alcohol spectrum disorders courtney kihlberg, md, msph...
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Preventing Alcohol Exposure and Fetal Alcohol Spectrum Disorders
Courtney Kihlberg, MD, MSPH
Assistant ProfessorDivision of Preventive
MedicineMeharry Medical College
Nashville, Tennessee18 May 2012
Funded by a grant from the Centers for Disease Control and Prevention (CDC) – 1U84DD000882
Funded by a grant from the Centers for Disease Control and
Prevention (CDC) – 1U84DD000882
No other support or disclosures
Preventing Alcohol Exposure and Fetal Alcohol Spectrum Disorders
DISCLOSURES
Objectives
Increase OB/GYN providers’ competency in preventing alcohol exposure during pregnancy
Review the epidemiology, screening tools, and diagnostic criteria for fetal alcohol spectrum disorders
Examine evidence-based practices in prevention, identification of, and multidisciplinary interventions for fetal alcohol spectrum disorders
Presentation OutlineExplore barriers
healthcare providers face with FASD prevention, diagnosis, & care
Examine diagnostic criteria
Review epidemiologic data
Practice alcohol screening & prevention techniques
Discuss intervention & treatment options
www.cdc.gov/ncbddd/fasd/videos/Iyal/long/Iyal_long.html
Overcoming Barriers
“Practice Makes Perfect”
Queried one of your pregnant moms on alcohol intake in the household?
Considered alcohol exposure in a women with a child from a prior pregnancy who has: Learning or behavioral difficulties
(e.g. ADHD)? Organ or growth abnormalities? Dysmorphic features?
How often do you andhow recently have you…
Barriers We Face as Providers
Prevention of Alcohol Use among Pregnant Women Lack of training Uncertain about how to intervene if problem is found
Time constraints Personal discomfort
Diagnosis and Care of Children with FASDs Lack of training Uncertain about how to intervene if problem is found
Fear of offending mother Belief that the harm is already done
Weisner C, Matzger H. Alcohol Clin Exp Res. 2003 Jul;27(7):1132-41; Nevin AC et al. BMC Fam Pract. 2002;3:2. Zoorob R, Aliyu MH, Hayes C. Alcohol. 2010 Jun;44(4):379-85.
Breaking Down Barriers
Neonatal diagnosis is NOT a hopeless prognosis
Appropriate medical interventions + Community support =
Minimized (though not eliminated) impact of alcohol-related
birth injury and neurodevelopmental disabilities
Prevention in Future Pregnancies
Diagnostic Criteria
3 (+3 ) ± 1 = FAS
3 Requirements3 Embedded Requirements
1 “Given” Not Required
Criteria for Diagnosing FASWith or WITHOUT confirmed fetal
exposure to alcohol, diagnosis requires documentation of
All three dysmorphic facial features smooth philtrum, thin vermillion border, small
palpebral fissuresPre- or post-natal growth deficit Structural, neurologic, or functional central nervous system (CNS) abnormality
Bertrand J, Floyd RL, Weber MK. Morbidity and Mortality Weekly Review. October 28, 2005/54;1-10
#1 Facial Abnormalities of FAS
1. Smooth philtrum
2. Thin vermillion border
3. Small palpebral fissures
Photo courtesy of Teresa Kellerman
Lip-Philtrum GuideDeveloped by University of
Washington FAS Diagnostic & Prevention Network
Guide 1 – CaucasiansGuide 2 – African Americans
Back side provides face & height-weight tables from the FASD Diagnostic Guide (2004)
Order fromhttp://depts.washington.edu/fasdpn/htmls/order-forms.htm
http://fasdcenter.samhsa.gov/educationTraining/courses/CapCurriculum/competency2/facial2.cfm
Measuring the Palpebral Fissures
Astley, et al. Magnetic Resonance Imaging Outcomes From a Comprehensive Magnetic Resonance Study of Children With Fetal Alcohol Spectrum Disorders. Alcoholism: Clinical and Experimental Research, Oct 2009.
Measuring the Palpebral Fissures
http://depts.washington.edu/fasdpn/images/pfl-eyesopen2006a.jpg accessed July 1, 2011.
Comparing Palpebral Fissure Measurements to Norms
Active excel spreadsheet accessed from http://depts.washington.edu/fasdpn/htmls/diagnostic-tools.htm on July 1, 2011.
Accuracy of Methods for Measuring Palpebral Fissure
Lengths
Clear Plastic Ruler42% concordant with photometric measures
Discordance: ruler equally smaller and larger
Blunt Precision Slide Calipers18% concordant with photometric measures
24% concordant with ruler measures
Discordance: calipers usually measured larger
Cranston, et al. Concordance of Three Methods for Palpebral Fissure Length Measurement in the Assessment of FASDs. Can J Clin Pharmacol, 2009.
Streissguth, 1994
Photos courtesy of the University of Louisville Fetal Alcohol Spectrum Disorders (FASD) Clinic - Weisskopf Child Evaluation Center, and the FASD Southeast Regional Training Center at Meharry Medical College Department of Family and Community Medicine: FASDsoutheast.orgAny use of these photos requires written permission from the University of Louisville FASD Clinic - Weisskopf Child Evaluation Center and the proper acknowledgement as written in this caption.
Astley, et al. Magnetic Resonance Imaging Outcomes From a Comprehensive Magnetic Resonance Study of Children With Fetal Alcohol Spectrum Disorders. Alcoholism: Clinical and Experimental Research, Oct 2009.
http://depts.washington.edu/fasdpn/htmls/face-software.htm accessed July 1, 2011.
#2 Growth Deficits in FAS
TimingPrenatal or PostnatalAt any one point
Degree≤ 10th percentile for age and sex
adjusted for gestational ageHeight or Weight (or Head
Circumference)
#3 CNS Abnormalities of FAS
Structural AbnormalityHead
Circumference ≤ 10th percentile
a. Clinically meaningful brain abnormalities observed through imaging (reduction in size or change in shape of corpus callosum, cerebellum, or basal ganglia)
Bertrand J, Floyd RL, Weber MK. MMWR. October 28, 2005/54;1-10.photo: Clarren, 1986.
Corpus Callosum Structural Abnormality
A: 14 year old control subject: Normal corpus callosumB: 12 year old with FAS: Thin corpus callosumC: 14 year old with FAS: Agenesis of the corpus callosum
Mattson, S.N.; Jernigan, T.L.; and Riley, E.P. 1994. MRI and prenatal alcohol exposure: Images provide insight into FAS. Alcohol Health & Research World 18(1): 49-52. (used with permission)
#3 CNS Abnormalities of FAS
Neurologic Abnormality Motor problems or seizure NOT from a postnatal
insult or fever Other soft neurologic signs outside normal limits
Functional AbnormalityGlobal cognitive or intellectual deficits (IQ <3rd
percentile)Substantial developmental delay in younger
children Functional deficits (<16th percentile) in at least 3
domains: Cognitive or developmental deficits
Executive functioningAbstract concepts
Problem solving Motor functioning Attention
problems/hyperactivity Social skills Other
(sensory, memory, language)
Bertrand J, Floyd RL, Weber MK. MMWR. October 28, 2005/54;1-10
What are FASDs?
“Fetal Alcohol Spectrum Disorder” is NOT a diagnostic category, but rather an umbrella term describing a range of effects that can occur in a person whose mother drank alcohol during pregnancy
Bertrand J, Floyd RL, Weber MK. MMWR. October 28, 2005 / 54;1-10.
FASD 4-Digit Diagnostic Code
Ranks each of the following on a 4 point scale: GrowthFaceCNSAlcohol Exposure
256 possible 4-Digit Code combinations
All combinations assigned to one of 22 Diagnostic Categories
Astley, SJ. Diagnostic Guide for FASD: The 4-Digit Code, 3rd Edition, 2004. Accessed from http://depts.washington.edu/fasdpn/pdfs/guide2004.pdf on July 5, 2011.
Astley, SJ. Diagnostic Guide for FASD: The 4-Digit Code, 3rd Edition, 2004. Accessed from http://depts.washington.edu/fasdpn/pdfs/guide2004.pdf on July 5, 2011.
Astley, SJ. Diagnostic Guide for FASD: The 4-Digit Code, 3rd Edition, 2004. Accessed from http://depts.washington.edu/fasdpn/pdfs/guide2004.pdf on July 5, 2011.
From FAS Diagnostic Criteria to Life with an FASD….
IQ averages 60, range 20-110
Poor JudgmentProblems with
BehaviorMotor SkillsSocial Interactions
Excessive body contactImpulsivenessIntrusivenessLack of stranger anxiety
www.cdc.gov/ncbddd/fasd/videos/Iyal/long/Iyal_long.html
…. Even Beyond Early Childhood
Disrupted Schooling43% of teens with FASDs are at high risk of
having school interrupted by suspension, expulsion, or from dropping out
Conduct ProblemsAntisocial BehaviorsInability to follow rules, lying, and stealing
Difficulties SocializingMaintaining FriendshipsDepression and Anxiety Inappropriate Sexuality
GOALIndependent Living
0.2 to 1.5 per 1,000 caveats
Actually DiagnosedFAS vs. FASD
Regional Variances
Epidemiology of FASDs
Incidence of FASDs
Comparable with or higher than rates for other common developmental disabilities (Down syndrome, spina bifida)
0.2 to 1.5 cases of FAS per 1,000 live births in the US
Rates in other studies range from 0.5 to 2.0 cases per 1,000
Other FASDs are believed to occur about 3 times as often as FAS
CDC. MMWR Morb Mortal Wkly Rep 2002;51:433-435.
CDC. A Call to Action: Advancing Essential Services and Research on Fetal AlcoholSpectrum Disorders. March 2009. Accessed from www.cdc.gov/ncbddd/fasd/douments/calltoaction.pdf.
Prevalence in Other Countries
South AfricaHighest reported prevalence rates of FAS
in the worldIn 2000: 40.5 - 46.4 per 1,000 childrenIn 2002: 65.2 - 74.2 per 1,000 childrenIn 2011: 70 – 80 per 1,000 children
(partially attributed to increase in provider awareness and recognition of diagnosis)
Russia20% of children in Moscow orphanages
and boarding schools had physical features of FAS (N=1,000)
May et al., Am. J. of Public Health 90 (2000); Viljoen et al., J. Stud. Alcohol 66 (2005). Riley et al, Alcohol Clin Exp Res (2003). Bulletin of the World Health Organization 2011;89:398–399. doi:10.2471/BLT.11.020611
Reported incidence rate of FAS, by year of birth, CDC Birth Defects Monitoring Program, 1979-1992
Courtesy: NIAAA webpage. Cordero, J.F., et al. Alcohol Health & Research World 18(1):82–85, 1994.
Prevalence of Alcohol Use Among Women of Childbearing Age
Known vs. Unknown Pregnancies
Frequency of UseOccasional / Any UseBinge
4 or more drinks on one or more occasions for women
5 or more drinks on one or more occasion for men
Kanny, Liu, Brewer. “Binge drinking – United States 2009.” CDC, MMWR.Photo: courtesy of Dang, CDC.
Accessed from www.cdc.gov/ncbddd/fasd/data.html on May 14, 2012.
State-specific weighted prevalence estimates of Alcohol use among Women Aged 18–44 Years,BRFSS, 2010
State Any Use* Binge†
Florida 49.7 13.5Utah 21.5 7.0
Wisconsin 67.7 22.7
US (median) 51.2 15.2
• * 1 or more drinks during the last 30 days• † 4 or more drinks on any one occasion during the last 30 days • standard drink: 0.60 ounces of pure alcohol equivalent to one 12-ounce beer or wine cooler, one 5-ounce glass of wine, or 1.5 ounces of 80 proof distilled spirits [hard liquor]
344.1
2.9
24.7
9.1
18.618.7
26.1
23.2
35.1
0
5
10
15
20
25
30
35
40
Total White Black Hispanic AmericanIndian
Asian Morethan 1race
Perc
enta
ge
PregnantNot Pregnant
Females Aged 15-44 Years Reporting Past Month Binge† Alcohol Use, by Race/Ethnicity and Pregnancy Status, 2002 and 2003 Combined
† Binge = 5 or more drinks on the same occasion on at least 1 day in the past 30 days
Substance Abuse and Mental Health Services Administration, National Survey on Drug Use and Health 2005
Race/Ethnicity Percent
White 63Hispanic or Latino 39.7African American 38.5
Alcohol consumption among adults 18 years of age and over, by selected characteristics: United States, 1997, 2004, 2005. From National Center for Health Statistics. Health, United States, 2007. Table 68 (1 of 3). Hyattsville, MD: 2007.
Percentage of Female (>18 years of age) Current Drinkers by
Race/Ethnicity
Race Percent
White 22.6Hispanic or Latino 16.9African American 13
Alcohol consumption among adults 18 years of age and over, by selected characteristics: United States, 1997, 2004, 2005. From National Center for Health Statistics. Health, United States, 2007. Table 68. Hyattsville, MD: 2007.
Percentage of Female (>18 years of age) Binge † Drinkers by
Race/Ethnicity
† Binge = 5 or more drinks on the same occasion on at least 1 day in the past year
Stomach
Brain
Liver
Kidneys
Fetus
Muscles
Nerves
Placenta
Brain
Heart
Organs
Breast
Biologic Plausibility and Mechanism of Action
Alcohol’s Effects on the Developing Fetus
abnormal nerve cell proliferation cell growth, division, survival
altered cell membranesbiochemical/electrical signalingintracellular calcium regulation gene expression
impaired nerve cell migration (astrocytes)cell adhesionaxon formation
free radical formation
NIAAA, 2000
Areas of the brain that can be damaged in utero by maternal alcohol consumption
Warren & Foudin. Alcohol Research & Health 25(3):153–158, 2001.
Major Effects of Alcohol by Trimester
Courtesy UCLA RTC.
Baldwin. Fetal Alcohol Spectrum Disorder, Florida Resource Guide. Accessed from http://www.doh.state.fl.us/family/socialwork/pdf/fasd.pdf on April 30, 2012.
Any Volunteers?
How to screen for and prevent alcohol use in
pregnancy
Time to TWEAK your neighbor
TWEAK Alcohol Assessment
Originally developed to screen for at-risk drinking during pregnancy
Proven effectiveness in pregnant women and African-American women of low SES
Five-item scale
T - Tolerance"How many drinks does it take you to feel the first effects of the alcohol?"
W - Worry"Have close friends or relatives worried or complained about your drinking in the past year?"
E - Eye-Opener"Do you sometimes take a drink in the morning when you first get up?"
A - Amnesia "Has a friend or family member ever told you about things you said or did while you were drinking that you could not remember?" (blackouts)
K(C) - Cut Down"Do you sometimes feel the need to cut down on your drinking?"
TWEAK Scoring
Tolerance: 3 or more drinks to feel effect = 2 pointsWorry: Yes = 2 pointsEye Opener: Yes = 1 pointAmnesia: Yes = 1 pointCut Down: Yes = 1 point
Pregnant WomenScore of >0 indicates at-risk drinking
Non-PregnantScore of 2 indicates likelihood of at-risk drinkingScore of ≥ 3 indicates problem drinking or alcoholism
Chang G. Alcohol Research and Health. 2001;25(3):204-209.
Audio Computerized Self-Report Interview
Ear phones used with recorded voice asking questions
TWEAK plus questions on quantity and frequency during 3 months prior to pregnancy through present
Validated in low SES, low literacy minority population
Thornberry, et al. Nursing. 2002; 20(2):46-52.
Baldwin. Fetal Alcohol Spectrum Disorder, Florida Resource Guide. Accessed from http://www.doh.state.fl.us/family/socialwork/pdf/fasd.pdf on April 30, 2012.
Ask, Assess, Advise, Assist Method
AskDo you drink alcohol, including beer, wine or hard
liquor?On average, how many days per week do
you drink alcohol?On a typical day when you drink, how many
drinks do you have?What’s the maximum number of drinks you
had on a given occasion in the last month?
Assess: Know what a standard drink is
www.uwsuper.edu/.../images/alcohol.jpg
Advise and Assist
Brief Interventions have been found to be effective with female problem drinkers in primary-care clinics
5-10 minute counseling session can reduce alcohol use in women by 20-30%
Wallace P, et al. BMJ1988;297(6649):663-668. Fleming MF, et al. JAMA. 1997;277(13):1039-1045.
Brief Intervention: Ask and Assess Risk Level
1. Raise the subject: Alcohol Assessment Test“I like to ask all my patients about their drinking
patterns”
2. Does the patient have alcohol-related problems? (Medical, behavioral, social, familial)
3. Provide feedback about alcohol risk level: Relate health concerns / pregnancy risks to alcohol use
“I am very concerned about how your drinking may affect your health”
“There is no known safe limit for drinking during pregnancy. You need to stop drinking completely b/c when you drink, your baby drinks.”
Brief Intervention: Advise and Assist4. Engage the patient in the process: Assess,
enhance motivation and patient responsibility“How do you feel about your drinking?”
5. For alcohol-risk, establish drinking goals: Advise and negotiate cut down “Are you ready to set a drinking goal? What do you think will work best for you?” (give brochure materials)
For alcohol dependence, advise abstinence and refer to specialized treatment.
6. Follow up: review progress, commend effort, reinforce positive change, reassess motivation
NIAAA, Office of Research on Minority Health, Identification of At Risk Drinking and Intervention with Women of Childbearing Age. NIH Publication No. 99-4368 (1999)
Start with the Basics!
Decrease unintended pregnanciesInitiate contraceptive effortsConfirm proper and
consistent use
Example from Project CHOICES Changing High-Risk AlcOhol Use &
Increasing Contraception Effectiveness Study
Photo: courtesy Dang, CDC.
Project CHOICES
4 motivational counseling sessions and a contraception consultation visit delivered over 12-14 weeks
At 3, 6, and 9 month follow-up, the odds for reducing the risk of an Alcohol Exposed Pregnancy (AEP) were 2-fold higher among women receiving the intervention as compared to the control group.
4 motivational counseling sessions and a contraception consultation visit delivered over 12-14 weeks
At 3, 6, and 9 month follow-up, the odds for reducing the risk of an Alcohol Exposed Pregnancy (AEP) were 2-fold higher among women receiving the intervention as compared to the control group.
Floyd, et al. Preventing Alcohol-Exposed Pregnancies: A Randomized Controlled Trial American Journal of Preventive Medicine; January 2007; 32(1):1-10.
It may be difficult to talk with patients about
alcohol use and the prevention of FASDs, butyou can do it
and there are resources that can help!
Improving Healthcare Provider Practices
Partners& Policy
Monitoring
HealthEducation
& Promotion
CDC’s FAS
Prevention Team
Dissemination
of Effective Interventions
Intervention Research
Elizabeth P. Dang, MPH, Behavioral Scientist, FAS Prevention Team, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention
FASD Regional Training Centers (RTCs)
In 2002, Congressional language indicated that the CDC would…Develop guidelines for the diagnosis of FAS
and other prenatal alcohol-related conditionsIncorporate these guidelines into curricula for
medical and allied health students and practitioners
CDC funded the original four RTCsSoutheast: Meharry Medical CollegeNortheast: Univ of Med & Dentistry of New
JerseyMidwest: Saint Louis UniversityWest: UCLA
Elizabeth P. Dang, MPH, Behavioral Scientist, FAS Prevention Team, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention
Current RTCs 2011-2014
Southeast: Meharry Medical College
Great Lakes: Univ of Wisconsin
Arctic: Univ of Alaska,Anchorage
Frontier: Univ of Nevada, Reno
Midwest: Saint Louis Univ
http://www.cdc.gov/ncbddd/fasd/training.html accessed April 30, 2012.
Tools from www.cdc.gov/fasd
Adapted from Elizabeth P. Dang, MPH, Behavioral Scientist, FAS Prevention Team, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention
Developed by ACOG and CDCBrief guideLaminated screening
instrumentResource informationPatient handouts
Pocket CardiPhone App
FASD Prevention Tool Kits
Accessed from http://www.womenandalcohol.org/clinicians.html on April 30, 2012.
Prevention Materials Targeting Specific Groups
Iowa
St. Louis, MO
Los Angeles County, California
FASDs are 100% preventablethere is no known safe amount of
alcohol to drink while pregnant there is no safe time during
pregnancy to drink there is no safe type of alcohol
“Practice Makes Perfect” for providers regarding screening and
prevention
“Keep It Simple”
For those living with an FASD
FASD Interventions and Treatments
Multidisciplinary Approach is CriticalMedical Treatment Mental Health Treatment
PharmacotherapyBehavioral Therapies and
InterventionsSkilled Nursing ServicesPhysical, Occupational, and Speech
TherapyEducational Interventions
Early Intervention ServicesExceptional EdTeacher In-Service Training
Green JH. Fetal Alcohol Spectrum Disorders: Understanding the Effects off Prenatal Alcohol Exposure and Supporting Students. Journal of School Health. March 2007;77:103-108.
SAMHSA, 2007.
Development of Individual Education Plans
(IEPs)
Teaching Students with Fetal Alcohol Syndrome/Effects. British Columbia, 1996. Accessed from http://www.bced.gov.bc.ca/specialed/fas/ on June 15, 2011.
Resources for Educators
Multidisciplinary Approach is Critical
Caregiver SupportSpecial consideration for Birth Mothers
Parent Training
http://www.nofas.org/coh/default.aspx
Multidisciplinary Approach is Critical
Case ManagementArt and Music
TherapyService Animals…. and more….
www.cdc.gov/ncbddd/fasd/videos/Iyal/long/Iyal_long.html
Marcus InstituteLearning readinessMath
U. OklahomaHealth Sciences
PreschoolerBehavior
U. Washington Clinically Sig. Behavior Problems
U. CaliforniaLos Angeles
Friendships Social skills
Children’s Research Triangle
Executive Functioning
CDC
Intervening
with Children
with FASDs
Elizabeth P. Dang, MPH, Behavioral Scientist, FAS Prevention Team, National Center on Birth Defects and Developmental Disabilities, CDC.
Information and Treatment Resources
National Organization on FAS (NOFAS)(202) 785-4585 www.nofas.org
Local Alcohol and Drug Treatment Resources http://findtreatment.samhsa.gov/facilitylocatordoc.htm
CDC FASD Home Page www.cdc.gov/fasd
Southeast Fetal Alcohol Spectrum Disorder Regional Training Center (FASD RTC) in the Meharry Medical College Department of Family & Community Medicine615) 327-5525 www.fasdsoutheast.org
Pensacola Resources
Florida Department of Healthwww.doh.state.fl.us/family/mch/substanceabuse/alcohol/profas_friends.html
Link to the 2005 guide from FSU Center for Prevention and Early Intervention Policy
Healthy Start being redesigned from April 2011 – March 2013
Florida Alcohol and Drug Abuse Associationwww.fadaa.org
Funded by a grant from the Centers for Disease Control and
Prevention (CDC) – 1U84DD000882
Preventing Alcohol Exposure and Fetal Alcohol Spectrum Disorders
QUESTIONS