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Preventing Alcohol Exposure and Fetal Alcohol Spectrum Disorders

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1 Preventing Alcohol Exposure and Fetal Alcohol Spectrum Disorders
Courtney Kihlberg, MD, MSPH Assistant Professor Division of Preventive Medicine Meharry Medical College Nashville, Tennessee 18 May 2012 Funded by a grant from the Centers for Disease Control and Prevention (CDC) – 1U84DD000882

2 Preventing Alcohol Exposure and Fetal Alcohol Spectrum Disorders
DISCLOSURES Funded by a grant from the Centers for Disease Control and Prevention (CDC) – 1U84DD000882 No other support or disclosures

3 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

4 Presentation Outline Explore barriers healthcare providers face with FASD prevention, diagnosis, & care Examine diagnostic criteria Review epidemiologic data Practice alcohol screening & prevention techniques Discuss intervention & treatment options

5 “Practice Makes Perfect”
Overcoming Barriers “Practice Makes Perfect”

6 How often do you and how recently have you…
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?

7 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 Fear of offending mother Belief that the harm is already done Weisner C, Matzger H. Alcohol Clin Exp Res Jul;27(7): ; Nevin AC et al. BMC Fam Pract. 2002;3:2. Zoorob R, Aliyu MH, Hayes C. Alcohol Jun;44(4):

8 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

9 3 Embedded Requirements
Diagnostic Criteria 3 (+3 ) ± 1 = FAS 3 Requirements 3 Embedded Requirements 1 “Given” Not Required

10 Criteria for Diagnosing FAS
With or WITHOUT confirmed fetal exposure to alcohol, diagnosis requires documentation of All three dysmorphic facial features smooth philtrum, thin vermillion border, small palpebral fissures Pre- 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

11 #1 Facial Abnormalities of FAS
Smooth philtrum Thin vermillion border Small palpebral fissures Photo courtesy of Teresa Kellerman

12 Lip-Philtrum Guide Developed by University of Washington FAS Diagnostic & Prevention Network Guide 1 – Caucasians Guide 2 – African Americans Back side provides face & height-weight tables from the FASD Diagnostic Guide (2004) Order from pn/htmls/order-forms.htm

13 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.

14 Measuring the Palpebral Fissures
accessed July 1, 2011.

15 Comparing Palpebral Fissure Measurements to Norms
Active excel spreadsheet accessed from on July 1, 2011.

16 Accuracy of Methods for Measuring Palpebral Fissure Lengths
Clear Plastic Ruler 42% concordant with photometric measures Discordance: ruler equally smaller and larger Blunt Precision Slide Calipers 18% concordant with photometric measures 24% concordant with ruler measures Discordance: calipers usually measured larger Single, experienced clinician n = 50 children referred for FASD eval and 50 adult med students Cranston, et al. Concordance of Three Methods for Palpebral Fissure Length Measurement in the Assessment of FASDs. Can J Clin Pharmacol, 2009.

17 Streissguth, 1994

18 Growth Deficiency (weight and/or height) 10% at any one point pre- or postnatal (adjusted for age, sex, gestational age, race/ethnicity) 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.org Any 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. 

19 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.

20 http://depts. washington. edu/fasdpn/htmls/face-software
accessed July 1, 2011.

21 #2 Growth Deficits in FAS
Timing Prenatal or Postnatal At any one point Degree ≤ 10th percentile for age and sex adjusted for gestational age Height or Weight (or Head Circumference)

22 #3 CNS Abnormalities of FAS
Structural Abnormality Head Circumference ≤ 10th percentile 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.

23 Corpus Callosum Structural Abnormality
A: 14 year old control subject: Normal corpus callosum B: 12 year old with FAS: Thin corpus callosum C: 14 year old with FAS: Agenesis of the corpus callosum Mattson, S.N.; Jernigan, T.L.; and Riley, E.P MRI and prenatal alcohol exposure: Images provide insight into FAS. Alcohol Health & Research World 18(1): (used with permission)

24 #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 Abnormality Global 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 functioning Abstract 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

25 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.

26 FASD 4-Digit Diagnostic Code
Ranks each of the following on a 4 point scale: Growth Face CNS Alcohol 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, Accessed from on July 5, 2011.

27 Astley, SJ. Diagnostic Guide for FASD: The 4-Digit Code, 3rd Edition, Accessed from on July 5, 2011.

28 Astley, SJ. Diagnostic Guide for FASD: The 4-Digit Code, 3rd Edition, Accessed from on July 5, 2011.

29 From FAS Diagnostic Criteria to Life with an FASD….
IQ averages 60, range Poor Judgment Problems with Behavior Motor Skills Social Interactions Excessive body contact Impulsiveness Intrusiveness Lack of stranger anxiety

30 …. Even Beyond Early Childhood
Disrupted Schooling 43% of teens with FASDs are at high risk of having school interrupted by suspension, expulsion, or from dropping out Conduct Problems Antisocial Behaviors Inability to follow rules, lying, and stealing Difficulties Socializing Maintaining Friendships Depression and Anxiety Inappropriate Sexuality GOAL Independent Living

31

32 0.2 to 1.5 per 1,000 Epidemiology of FASDs caveats Actually Diagnosed
FAS vs. FASD Regional Variances

33 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: CDC. A Call to Action: Advancing Essential Services and Research on Fetal AlcoholSpectrum Disorders. March Accessed from

34 Prevalence in Other Countries
South Africa Highest reported prevalence rates of FAS in the world In 2000: per 1,000 children In 2002: per 1,000 children In 2011: 70 – 80 per 1,000 children (partially attributed to increase in provider awareness and recognition of diagnosis) Russia 20% 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: /BLT

35 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.

36 Prevalence of Alcohol Use Among Women of Childbearing Age
Known vs. Unknown Pregnancies Frequency of Use Occasional / Any Use Binge 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.

37 Any use in pregnancy - 12.2% or 1 in 8
Binge in pregnancy – 1.9% or 1 in 50

38 Accessed from www.cdc.gov/ncbddd/fasd/data.html on May 14, 2012.

39 State-specific weighted prevalence estimates of Alcohol use among Women Aged 18–44 Years, BRFSS, 2010 State Any Use* Binge† Florida 49.7 13.5 Utah 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]

40 Females Aged 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

41 Percentage of Female (>18 years of age) Current Drinkers by Race/Ethnicity
White 63 Hispanic or Latino 39.7 African American 38.5 Alcohol consumption among adults 18 years of age and over, by selected characteristics: United States, 1997, 2004, From National Center for Health Statistics. Health, United States, Table 68 (1 of 3). Hyattsville, MD: 2007.

42 Percentage of Female (>18 years of age) Binge † Drinkers by Race/Ethnicity
White 22.6 Hispanic or Latino 16.9 African American 13 † Binge = 5 or more drinks on the same occasion on at least 1 day in the past year Alcohol consumption among adults 18 years of age and over, by selected characteristics: United States, 1997, 2004, From National Center for Health Statistics. Health, United States, Table 68. Hyattsville, MD: 2007.

43 Biologic Plausibility and Mechanism of Action
Brain Nerves                               Brain Stomach Placenta Fetus Breast Heart Organs Liver Muscles Kidneys

44 Alcohol’s Effects on the Developing Fetus
abnormal nerve cell proliferation cell growth, division, survival altered cell membranes biochemical/electrical signaling intracellular calcium regulation gene expression impaired nerve cell migration (astrocytes) cell adhesion axon formation free radical formation NIAAA, 2000

45 Areas of the brain that can be damaged in utero by maternal alcohol consumption
Warren & Foudin. Alcohol Research & Health 25(3):153–158, 2001.

46 Major Effects of Alcohol by Trimester
Courtesy UCLA RTC.

47 Baldwin. Fetal Alcohol Spectrum Disorder, Florida Resource Guide
Baldwin. Fetal Alcohol Spectrum Disorder, Florida Resource Guide. Accessed from on April 30, 2012.

48 Time to TWEAK your neighbor
Any Volunteers? How to screen for and prevent alcohol use in pregnancy

49 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

50 "Do you sometimes take a drink in the morning when you first get up?"
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?"

51 TWEAK Scoring Tolerance: 3 or more drinks to feel effect = 2 points
Worry: Yes = 2 points Eye Opener: Yes = 1 point Amnesia: Yes = 1 point Cut Down: Yes = 1 point Pregnant Women Score of >0 indicates at-risk drinking Non-Pregnant Score of 2 indicates likelihood of at-risk drinking Score of ≥ 3 indicates problem drinking or alcoholism Chang G. Alcohol Research and Health. 2001;25(3):

52 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 ; 20(2):46-52.

53 Baldwin. Fetal Alcohol Spectrum Disorder, Florida Resource Guide
Baldwin. Fetal Alcohol Spectrum Disorder, Florida Resource Guide. Accessed from on April 30, 2012.

54 Ask, Assess, Advise, Assist Method
Do 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?

55 Assess: Know what a standard drink is

56 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): Fleming MF, et al. JAMA ;277(13):

57 Brief Intervention: Ask and Assess Risk Level
Raise the subject: Alcohol Assessment Test “I like to ask all my patients about their drinking patterns” Does the patient have alcohol-related problems? (Medical, behavioral, social, familial) 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.”

58 Brief Intervention: Advise and Assist
Engage the patient in the process: Assess, enhance motivation and patient responsibility “How do you feel about your drinking?” 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. 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 (1999)

59

60 Decrease unintended pregnancies
Start with the Basics! Decrease unintended pregnancies Initiate contraceptive efforts Confirm proper and consistent use Example from Project CHOICES Changing High-Risk AlcOhol Use & Increasing Contraception Effectiveness Study Photo: courtesy Dang, CDC.

61 Project CHOICES 4 motivational counseling sessions
and a contraception consultation visit delivered over 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. Recruit non-treatment-seeking women at risk for AEP: Fertile and years of age Sexual intercourse w/ a man in past 3 months Using ineffective or no contraception Drinking 8 or more drinks per week OR Drinking 5 or more drinks on one or more days in last 3 months. “Reduced” AEP risk: using effective contraception OR drinking below risky levels 71% still in study at 9-month follow-up Both groups had reduced risk More intervention women changed both behaviors Not at risk by: intervention control Alcohol % 40% BC % 39% Floyd, et al. Preventing Alcohol-Exposed Pregnancies: A Randomized Controlled Trial American Journal of Preventive Medicine; January 2007; 32(1):1-10.

62 It may be difficult to talk with patients about alcohol use and the prevention of FASDs, but you can do it and there are resources that can help!

63 Improving Healthcare Provider Practices
Monitoring Health Education & Promotion Partners & Policy 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

64 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 conditions Incorporate these guidelines into curricula for medical and allied health students and practitioners CDC funded the original four RTCs Southeast: Meharry Medical College Northeast: Univ of Med & Dentistry of New Jersey Midwest: Saint Louis University West: UCLA Elizabeth P. Dang, MPH, Behavioral Scientist, FAS Prevention Team, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention

65 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 accessed April 30, 2012.

66 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

67 FASD Prevention Tool Kits
Developed by ACOG and CDC Brief guide Laminated screening instrument Resource information Patient handouts Pocket Card iPhone App

68 Accessed from http://www. womenandalcohol. org/clinicians
Accessed from on April 30, 2012.

69 Targeting Specific Groups
Prevention Materials Targeting Specific Groups Los Angeles County, California St. Louis, MO Iowa

70 “Keep It Simple” FASDs are 100% preventable
there 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

71 FASD Interventions and Treatments
For those living with an FASD

72 Multidisciplinary Approach is Critical
Medical Treatment Mental Health Treatment Pharmacotherapy Behavioral Therapies and Interventions Skilled Nursing Services Physical, Occupational, and Speech Therapy Educational Interventions Early Intervention Services Exceptional Ed Teacher In-Service Training Positive Behavior Support Programming: focuses on specific behaviors, the environmental factors that contribute and understanding the intent of the behaviors. Cognitive-Behavioral Strategies: social skills training, emotion identification, coping skills, anger management and self-talk Executive Function Training: behavioral awareness and self-control EDUCATION: Using concrete, hands-on learning methods Establishing structured routines Keep instructions short and simple Consistent and specific directions Repeating tasks over and over Constant supervision Different approaches needed compared to children with other disorders (i.e. ADHD), esp with Math (Jacobson, et al. Processing, 2011.) Green JH. Fetal Alcohol Spectrum Disorders: Understanding the Effects off Prenatal Alcohol Exposure and Supporting Students. Journal of School Health. March 2007;77:

73 Resources for Educators
Development of Individual Education Plans (IEPs) SAMHSA, 2007. Teaching Students with Fetal Alcohol Syndrome/Effects. British Columbia, Accessed from on June 15, 2011.

74 Multidisciplinary Approach is Critical
Caregiver Support Special consideration for Birth Mothers Parent Training

75 Multidisciplinary Approach is Critical
Case Management Art and Music Therapy Service Animals …. and more….

76 Intervening with Children with FASDs
Marcus Institute Learning readiness Math U. Oklahoma Health Sciences Preschooler Behavior U. Washington Clinically Sig. Behavior Problems U. California Los Angeles Friendships Social skills Children’s Research Triangle Executive Functioning CDC UCLA – 12 week, playdates, homework, take home techniques Marcus – math tutoring, parent support U Oklahoma – 14 sessions with therapist coaching -> decreased parent stress Triangle – behavior regulation, conduct Washington – self-care, family needs Elizabeth P. Dang, MPH, Behavioral Scientist, FAS Prevention Team, National Center on Birth Defects and Developmental Disabilities, CDC.

77 Information and Treatment Resources
National Organization on FAS (NOFAS) (202) Local Alcohol and Drug Treatment Resources CDC FASD Home Page Southeast Fetal Alcohol Spectrum Disorder Regional Training Center (FASD RTC) in the Meharry Medical College Department of Family & Community Medicine 615)

78 Pensacola Resources Florida Department of Health Healthy Start
ofas_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 Association

79 Preventing Alcohol Exposure and Fetal Alcohol Spectrum Disorders
QUESTIONS Funded by a grant from the Centers for Disease Control and Prevention (CDC) – 1U84DD000882


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