Fetal Alcohol Spectrum Disorders Prevention & Intervention – What Can Be Done?

1. Fetal Alcohol Spectrum Disorders Prevention & Intervention – What Can Be Done? Elizabeth Parra Dang, MPHFetal Alcohol Syndrome Prevention TeamNational Center on Birth Defects and Developmental DisabilitiesCenters for Disease Control and Prevention

2. Monitoring Alcohol Use • The prevalence of alcohol use and binge drinking among pregnant and nonpregnant women aged 18-44 has been relatively stable for the last 15 years. • 12.2% of women (1 in 8) drink while pregnant (in the past 30 days). • 1.9% of pregnant women (1 in 50) report binge drinking in the past 30 days.

3. Prevalence of Any Alcohol Use among Women Aged 18-44 Years– United States, 1991-2005

4. Prevalence of Binge Drinking among Women Aged 18-44 Years – United States, 1991-2005

5. Identifying and Intervening with Women at Risk for an Alcohol-Exposed Pregnancy

6. Project CHOICES Intervention Dual target: Women at risk can… • reduce drinking, • increase contraception effectiveness, or • both …to reduce the risk of alcohol-exposed pregnancy

7. Project CHOICES • Included 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 risk for an AEP were 2-fold higher among women receiving the intervention as compared to the control group.

8. Project CHOICES Strategy • Identify 6 settings with higher than national rates of women at risk for AEP • Recruit non-treatment-seeking women at riskfor AEP: • Fertile and 18-44 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. • Engage them in a motivational interviewing-based intervention (or control group)

9. Motivational Interviewing: A way to talk about behavior change • Client-centered • Goal-oriented (directive) method • Enhances internal motivation for change • Explores and resolves ambivalence • Empirically supported

10. Primary Outcome Variables • AEP risk: At beginning of study, all women were at risk for AEP because of inadequate or no contraception and risky drinking. • “Reduced” AEP risk: using effective contraception OR drinking below risky levels. • Effective Contraception: Using an accepted method of contraception as prescribed or described in packet insert. • Below risk drinking levels: Drinking less than 8 drinks per week and less than 5 on any one occasion.

11. Session I Rapport building and assessment Review of Women and Alcohol Fact Sheet Review of Contraception Methods Fact Sheet Advice to schedule contraception counseling visit Daily Journal for drinking, intercourse, and contraception Decisional Balance for pros and cons of drinking Decisional Balance for pros and cons of contraceptive use Brochures on alcohol, contraception methods, and community resources Session II Personalized Feedback Review and discuss Daily Journal information Discuss contraception counseling visit arrangement Review Decisional Balance Exercises Complete readiness for change rulers for drinking and contraception Complete initial Goal Statement and Change Plan Discuss Temptation and Confidence profiles Project CHOICES Intervention Sessions I and II

12. Session III Discussion of contraception counseling appointment Discussion of information recorded in Daily Journal Review and update of Decisional Balance and Self-Evaluation readiness for change exercises, Goal Statements and Change Plans Session IV Review of previous sessions Review of goals and finalization of Change Plans Problem solving, reinforcement of goals, strengthening commitment to change, and discussion of the participant’s next steps Project CHOICES Intervention Sessions III and IV

13. Project CHOICESEfficacy Study Results RCT Study: • Those in intervention group 2x more likely NOT at risk after 3, 6, 9 months than those in control group. • 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 49% 40% • BC 56% 39%

14. CHOICES Dissemination • Developed intervention and training materials, based on the protocol and related resources, for public health providers serving women of childbearing age: • Counselor Manual • Client Workbook • Assessment Tools • Training Curriculum • Resources-training videos, on-line tutorials, etc.

15. CHOICES Plus: A Preconception Approach to Reducing Alcohol and Tobacco-exposed Pregnancies Clinical trial aimed at testing the efficacy of combining a facilitated referral for smoking cessation with the CHOICES intervention to reduce risks for alcohol and tobacco-exposed pregnancies Awarded to University of Texas at Austin in Sept 2008

16. Purpose: To reduce AEPs by supporting and establishing the capacity of STD programs to implement and evaluate the Project Choices model Funded: Baltimore City Health Department Colorado Department of Public Health and Environment Reducing Risks for an Alcohol-Exposed Pregnancy in High Risk Women Attending STD Clinics in Urban Settings

17. Interventions for Children with FASDs

18. Intervening with Children with Fetal Alcohol Spectrum Disorders Marcus Institute Learning readiness Math U. California Los Angeles Friendships Social skills U. Oklahoma Health Sciences PreschoolerBehavior CDC U. Washington Clinically Sig. Behavior Problems Children’s Research Triangle Executive Functioning

19. Publication of Phase I Findings Phase II Community-based adaptations completed Development of Materials & Dissemination Strategies Intervening with Children Projects Citation: Jacquelyn Bertrand on behalf of the Interventions for Children with Fetal Alcohol Spectrum Disorders Research Consortium. (2009). Interventions for children with fetal alcohol spectrum disorders (FASDs): Overview of findings for five innovative research projects. Research in Developmental Disabilities, 30(5), 986-1006.

20. Intervening with Children: Phase I Children’s Research Triangle UCLA ECBI Problem Scale Intervention Pretest = 66.88 Post test = 60.54 Comparison Pretest = 64.38 Post test = 63.20 MarcusInstitute UW UOHSC Number of Needs Addressed Intervention = 2.44 (0.38) Comparison = 1.37 (0.62) Jacquelyn Bertrand on behalf of the Interventions for Children with Fetal Alcohol Spectrum Disorders Research Consortium. (2009). Interventions for children with fetal alcohol spectrum disorders (FASDs): Overview of findings for five innovative research projects. Research in Developmental Disabilities, 30(5), 986-1006.

21. UCLA: Bruin Buddies • Intervention • 12 week group sessions for child & parents • Instruction, practice, homework • Emphasis on play dates. • Explicit “in-your-pocket” techniques.

22. Marcus Institute: MILE Intervention Key Math Curriculum, 1-1 tutoring, & parent support group Cbcl- parent rpt. Composite Math improve

23. Intervention • Preschoolers • 14 sessions of in vivo with therapist coaching. • Parenting (PSM) comparison UOHSC: PCIT

24. Children’s Research Triangle: Alert • Intervention • ALERT program- “how does your engine run?” • Recognition of behavior state and strategies for managing behavior state • 12 weekly group sessions • Case management • Parent support group • Findings • Executive functioning, as measured by BRIEF, improved for participants in the intervention, especially for behavior regulation scales • Conduct problems scale of CBCL improved to below clinical threshold for participants in the intervention

25. Seattle: Families Moving Forward Intervention = 9 months of individualized behavior consultation, parent education, and teacher consultation

26. More Information on Phase I O'Connor MJ. Frankel F. Paley B. Schonfeld AM. Carpenter E. Laugeson EA. Marquardt R. (2007). A controlled social skills training for children with fetal alcohol spectrum disorders. Journal of Consulting & Clinical Psychology. 74(4):63-648. Kable JA, Coles CD, Taddeo E (2007). Socio-cognitive habilitation using the math interactive learning experience program for alcohol-affected children. Alcoholism: Clinical & Experimental Research. 31(8):1425-34. Coles, CD, Kable, JA, & Taddeo, E. (2009). Math Performance and Behavior Problems in Children Affected by Prenatal Alcohol Exposure: Intervention and Follow-Up. Journal of Developmental and Behavioral Pediatrics, 30(1), 7-15. Chasnoff IJ, Wells AM, Schmidt CA, Telford E, Bailey GW, Bailey LK. (2009). A randomized controlled trial of neurocognitive habilitation therapy for children with FAS/ARND: Impact on executive functioning. Submitted to. Journal of clinical and consulting psychology Olson, H. Carmichael, Quamma, J., Brooks, A., Lehman, K., Ranna, M, & Astley, S. (2005). Efficacy of a new model of behavioral consultation for families raising school-aged children with FASD and behavior problems. Alcoholism: Clinical & Experimental Research, 29 (Suppl. 5), 718.

27. Phase II: Intervening with Children who have an FASD in the community

28. Phase III: Materials & Dissemination • Sub-contract with 4 intervention sites • Part i: Develop professional grade materials • intervention manual • audio-visual materials • Part ii: Develop written dissemination strategy for each intervention (including sustainability plan). • Part iii: Develop overall promotional plan for all four interventions. • Future: Partner with FASD Regional Training Centers

29. Intervening with Youth and Young Adults with FASDs Purpose: To support innovative research to identify and evaluate interventions for youth and young adults (aged 16-25 years) with FASDs Randomized control design (at least 50 per group) Comprehensive medical, psychological, and environmental assessment Comprehensive referrals + targeted intervention Caregiver education/support Funded: UCLA and Saint Louis University

30. Health Promotion and Education

31. FASD Regional Training Centers

32. Fetal Alcohol Spectrum DisordersRegional Training Centers • The Fetal Alcohol Spectrum Disorders (FASD) Regional Training Centers have been established to develop, implement, and evaluate new training programs and/or enhance current training programs for medical and allied health students and practitioners regarding the prevention, identification, and management of FASDs, using the FASD Competency-Based Curriculum Development Guide for Medical and Allied Health Education and Practice. • Implementation of these programs aims to improve practice behaviors around FASD prevention, identification, and management and strengthen capacity among medical and allied health students and practitioners within these regions.

33. FASD Regional Training Centers, 2008-2011 Washington Maine Montana Vermont Minnesota North Dakota Michigan New Hampshire Oregon Wisconsin Massachusetts South Dakota Idaho New York Wyoming Michigan Rhode Island Connecticut Pennsylvania Iowa Nebraska New Jersey Nevada Ohio DC Indiana Delaware Illinois Utah Maryland West Virginia Colorado California Virginia Kansas Missouri Kentucky North Carolina Tennessee Arizona Oklahoma Arkansas South Carolina New Mexico Mississippi Georgia Alabama Texas Florida Louisiana Alaska Arctic RTC, Univ of Alaska Anchorage Midwestern RTC, Saint Louis Univ Great Lakes RTC, Univ of Wisconsin Hawaii Southeastern RTC, Meharry Medical College Frontier RTC, Univ of Nevada Reno

34. Developed by ACOG and CDC Contains Brief guide Laminated screening instrument Resource information Patient handouts CME credits available FASD Prevention Tool Kit for Women’s Health Clinicians

35. AAP Cooperative Agreement • Working on a variety of activities: • Professional education materials to inform pediatricians about prevention, identification, and treatment of children with FASDs • PediaLink, an online course on FASDs • FASD reference guide for pediatricians • FASD Factsheet • Information dissemination to members through • AAP OnCall, AAP SmartBriefs, and AAP News

36. NOFAS K-12 Curriculum Available since 2006 Age-appropriate components for grades K-2, 3-5, 6-8, 9-12 For more information, visit www.nofas.org

37. Multimedia & Tools Digital Story Web-based Features E-cards Widgets

38. Formative Research on Alcohol Use in Pregnancy • Contract with RTI International to conduct formative research on alcohol use and pregnancy • Explore women’s knowledge and beliefs about alcohol use and its risks during pregnancy through focus groups • Inform development of newCDC materials on alcohol usein pregnancy and FASDs

39. Partnerships and Policy

40. Prevention Report:Reducing Alcohol-Exposed Pregnancies Provides recommendations on evidence-based strategies to prevent alcohol-exposed pregnancies Serves as a guide for those in the field interested in implementing effective interventions for women at risk for an AEP Released in Spring 2009

41. Expand and test methods to assess universal prevention programs Promote effective, broad-based alcohol prevention efforts Assure that alcohol studies report findings by gender, age, and pregnancy outcomes, when possible Adapt screening and brief intervention strategies found to be effective in other settings (e.g., primary care, emergency room, and college settings) Establish screening and brief intervention programs for women of childbearing age Expand education and training of health care providers Assure access to appropriate treatment services and assure that treatment options address the special needs of women Conduct more research on intensive case management approaches for the highest risk women Conduct more research on the intergenerational effects of FASDs Reducing Alcohol-Exposed PregnanciesRecommendations Summary

42. Provides recommendations to improve and expand efforts on early identification, diagnostic services, and quality research on interventions for individuals with FASDs Serves as a “roadmap” to guide actions needed in services and research arenas Released in Spring 2009 A Call to Action: Advancing Essential Services and Research on Fetal Alcohol Spectrum Disorders

43. Improve early identification and diagnosis of FASDs Increase research on interventions for individualswith FASDs Promote continuums of care for individuals livingwith FASDs and their families Encourage comprehensive professional education on FASDs within multiple service systems Enhance local, state, and national collaborations Recognize grassroots family support and FASDcoalitions Improve surveillance of FASDs Maintain a national forum to advance servicesand research for individuals with FASDs A Call to ActionRecommendations Summary

44. For More Information: Elizabeth P. Dang, MPH Email: edang@cdc.gov CDC FASD Website: www.cdc.gov/fasd