Fetal Alcohol Spectrum Disorders: Common but Under-Recognized in the U.S.

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1 Fetal Alcohol Spectrum Disorders: Common but Under-Recognized in the U.S. Christina Chambers, PhD, MPH Co-Director of the Center for Better Beginnings Professor of Pediatrics Department of Pediatrics Department of Family Medicine and Public Health University of California, San Diego MOD November 5, 2018

2 DISCLOSURES Funding for this research came from the National Institutes of Health/National Institute of Alcohol Abuse and Alcoholism grant number U01 AA019879, the Collaboration on Fetal Alcohol Spectrum Disorders Prevalence (CoFASP)

3 LEARNING OBJECTIVES At the end of this presentation, attendees will be able to: 1) understand features of fetal alcohol spectrum disorders 2) describe frequency of these disorders in San Diego children and nationwide 3) understand role of clinicians in identifying at risk women and children

INTRODUCTION Alcohol use in women of reproductive age is common More than 50% of pregnancies are unplanned Leads to likely exposure in critical window of first few weeks of an unrecognized pregnancy

4 INTRODUCTION Alcohol use in women of reproductive age is common More than 50% of pregnancies are unplanned Leads to likely exposure in critical window of first few weeks of an unrecognized pregnancy Many women continue to consume alcohol after conception Chasnoff et al. Pediatrics. 2015;135(2): Finer LB, Henshaw SK. Perspect Sex Reprod Health. 2006; 38(2):90-6 GBD 2016 Alcohol Collaborators Lancet. 2018; S (18)

5 Prevalence of Alcohol Consumption in Women Last 30 days women who binged; MMWR 2012;61:534

INTRODUCTION A child with Fetal Alcohol Syndrome

Del Campo M and Jones KL. https://www.teratology.

6 INTRODUCTION A child with Fetal Alcohol Syndrome (FAS; a), an alcoholaffected fetal mouse (b), and a comparably-staged normal fetal mouse (c) are shown. Modified from Sulik et al Del Campo M and Jones KL. Glass and Mattson. Pediatric Neurotoxicology. 2016;13-49

7 INTRODUCTION Fetal alcohol spectrum disorders (FASD) are difficult to diagnose in early infancy due to lack of: 1) clinical expertise 2) awareness of the prenatal alcohol exposure level 3) characteristic facial features Ability to recognize alcohol-related characteristic neurobehavioral impairments in very young children is difficult Children with an FASD are highly likely to go undiagnosed - If an FASD is recognized, it is most often upon reaching school age when years of potential intervention opportunities have been lost Chasnoff et al. Pediatrics. 2015;135(2): Lange et al. Pediatrics. 2013;132(4):e May, Chambers, et al. JAMA Feb 6;319(5):474-82

8 COLLABORATION ON FETAL ALCOHOL SPECTRUM DISORDERS PREVALENCE (COFASP) To establish regionally-based prevalence estimates of FASD including FAS, pfas, and ARND Funded by NIH-NIAAA:

9 PREVIOUS STUDIES Previous estimates of the prevalence of FASD in the U.S. range for <1/10,000 to 1/1,000; one small study suggested 1/100 Prior estimates are poor - Routine surveillance methods do not work for this disorder - Data suggest that as many as 80% of children with FASD in special populations are not diagnosed or misdiagnosed Chasnoff IJ et al. Pediatrics 2015;135:264-70

11 STUDY DESIGN Cross-sectional Children in normal first grade classes Comprehensive evaluation of children and maternal interviews Four communities in the U.S. 1) Rocky Mountain, 2) Midwest, 3) Southeast, and 4) Pacific Southwest (San Diego) Two academic years at each site comprising a study eligible population of ~13,000 children

12 CRITERIA FOR FASD CLASSIFICATION Selected based on consensus of the CoFASP Steering Committee Practical to apply in diverse community settings with a onetime assessment Encompass adequate data on the key domains: physical, neurobehavioral, and prenatal alcohol exposure

13 PUBLISHED 2016 Updated Clinical Guidelines for Diagnosing Fetal Alcohol Spectrum Disorders, Pediatrics, August, 2016; Volume 138: Issue 2 Hoyme HE, Kalberg WO, Elliott AJ, Blankenship J, Buckley D, Marais AS, Manning MA, Robinson LK, Adam MP, Abdul-Rahman O, Jewett T, Coles CD, Chambers CD, Jones KL, Adnams CM, Shah PE, Riley EP, Charness ME, Warren KR, May PA

14 MINIMUM CRITERIA FOR ALCOHOL EXPOSURE Reported by the biological mother or collateral source 3 standard drinks per occasion on 2 or more occasions in pregnancy 6 standard drinks per week for 2 weeks in pregnancy Social or legal problems with alcohol in the period surrounding pregnancy

15 FETAL ALCOHOL SYNDROME (FAS) 2 or more facial anomalies: short palpebral fissures, thin vermilion border, smooth philtrum Growth deficiency 10th centile Head circumference 10th centile Cognitive and/or behavioral impairment - Global impairment 1.5 SD below mean or - Cognitive deficit in 1 neurobehavioral domain 1.5 SD below mean or - Behavioral deficit in 1 behavioral domain of self- regulation 1.5 SD below mean With or without documented alcohol exposure meeting CoFASP minimum criteria

16 PARTIAL FAS (PFAS) 2 or more facial anomalies: short palpebral fissures, thin vermilion border, smooth philtrum Cognitive and/or behavioral impairment - Global impairment 1.5 SD below mean or - Cognitive deficit in 1 neurobehavioral domain 1.5 SD below mean or - Behavioral deficit in 1 behavioral domain of self-regulation 1.5 SD below mean With documented alcohol exposure meeting minimum CoFASP criteria If no documented alcohol exposure meeting minimum criteria, also requires deficient growth or small head circumference 10th centile

17 ALCOHOL-RELATED NEURODEVELOPMENTAL DISORDER (ARND) Cognitive impairment and/or behavioral impairment - Global impairment 1.5 SD below mean or - Cognitive deficit in 2 neurobehavioral domains 1.5 SD below mean or - Behavioral deficit in 2 behavioral domains of self- regulation 1.5 SD below mean With documented alcohol exposure meeting minimum CoFASP criteria

18 SAN DIEGO SITE

19 STUDY DESIGN Serves >130,000 students 2 nd largest district in California 117 elementary schools, 9 K-8, & 49 charter schools Racially and ethnically diverse 55% eligible for free or reduced meals Sample consisted of 27 schools - Represented diversity in socioeconomic status (percent school free lunch program) and race/ethnicity

20 PARTICIPATING SCHOOLS

21 STUDY DESIGN CONTINUED Two additional special purpose samples 1) Clients of Regional Center for Developmental Disabilities ages 5-7 residing anywhere in the County 2) Southern California Indian health clinic serving tribal communities

22 METHODS SCHOOL SAMPLE With parental consent, screening on - Growth: height, weight, head circumference - Parental report of developmental concerns using the PEDS tool - Repeated first grade Positive screen 25th centile on any growth measure and/or 2 or more areas of concern on PEDS All screen positive children offered full evaluation at school or study office Random sample of screen negative children offered full evaluation Full evaluation: - Dysmorphology examination - Neurobehavioral testing battery - Maternal or collateral interview - Teacher Report Form - English or Spanish

23 EVALUATIONS

24 NEUROBEHAVIORAL TESTING BATTERY Type Test Testing for Cognitive Differential Ability Scales, 2nd Edition (DAS-II) NEPSY VMI Global Intellectual Assessment: General Cognitive Ability (GCA), Verbal, Nonverbal, Spatial Subtests for Executive Functioning Executive Functioning and Attention; Visual Spatial Graphomotor and Visual Spatial Academic Bracken Basic Concept Scale Numbers/Counting, Size/Comparisons, Shapes, Direction/Position, Time/Sequence Behavior Adaptive Function Achenbach Child Behavior Checklist (CBCL) Achenbach Teacher Report Form (TRF) Vineland Adaptive Behavior Scales, 2 nd Edition Communication, Daily Living Skills, Socialization, Motor Skills, Summary Score

25 SAN DIEGO SCHOOL SAMPLE Academic Year N Eligible N Screened Consented to Full Evaluation , , Total 4,409 1,

26 MATERNAL ALCOHOL IN SCHOOL SAMPLE 28% of women reported any drinking in the index pregnancy 11% of women met CoFASP minimum criteria

27 FASD CASES Category Number Classified Minimum Prevalence Rate/1000 (95% CI) FAS ( ) pfas ( ) ARND ( ) Total FASD ( ) Weighted Prevalence Rate/1000 (95% CI) 2.0 ( ) 38.8 ( ) 49.2 ( ) 90.0 ( )

28 FASD CASES Category Number Classified Minimum Prevalence Rate/1000 (95% CI) FAS ( ) pfas ( ) ARND ( ) Total FASD ( ) Weighted Prevalence Rate/1000 (95% CI) 4.9 ( ) 41.4 ( ) 38.2 ( ) 84.4 ( )

29 SUMMARY SAN DIEGO SCHOOL SAMPLE In this large urban setting, prevalence estimates are at least % using the most conservative estimates; likely higher In combination with other CoFASP sites, overall conservative estimates range from % <1% of children identified across 4 sites had a previous FASD diagnosis These data support the premise that FASD is a major public health issue in the U.S. and is currently under-recognized

31 WHAT S NEXT? FASD is as common or more common than autism spectrum disorders Yet it remains stigmatized

32 PREVENTION AND INTERVENTION FOR FASD Better biomarkers of exposure in pregnancy Build capacity for providers to identify children for evaluation and increase availability of specialized centers for diagnosis Better biomarkers of affected children Increase capacity for treatment/interventions for children Motivation for change in attitudes towards primary prevention

33 THANK YOU Collaborators Lily Xu, PhD - UCSD Jennifer Zellner, PhD UCSD Natasha Akshoomoff, PhD UCSD Howard Taras, MD UCSD Claire Coles, PhD Emory University Julie Kable, PhD Emory University Tatiana Foroud Indiana University NIH/NIAAA chchambers@ucsd.edu

Alcohol and Pregnancy: What Have We Learned in 37 Years?

Alcohol and Pregnancy: What Have We Learned in 37 Years? Kenneth Lyons Jones, M.D. Professor of Pediatrics University of California, San Diego School of Medicine La Jolla, CA Generalizations About Phenotype