CLINICAL REPORT Guidance for the Clinician in Rendering Pediatric Care

Fetal Alcohol Spectrum DisordersJanet F. Williams, MD, FAAP, Vincent C. Smith, MD, MPH, FAAP, the COMMITTEE ON SUBSTANCE ABUSE

abstractPrenatal exposure to alcohol can damage the developing fetus and is theleading preventable cause of birth defects and intellectual andneurodevelopmental disabilities. In 1973, fetal alcohol syndrome was firstdescribed as a specific cluster of birth defects resulting from alcohol exposurein utero. Subsequently, research unequivocally revealed that prenatal alcoholexposure causes a broad range of adverse developmental effects. Fetalalcohol spectrum disorder (FASD) is the general term that encompasses therange of adverse effects associated with prenatal alcohol exposure. Thediagnostic criteria for fetal alcohol syndrome are specific, and comprehensiveefforts are ongoing to establish definitive criteria for diagnosing the otherFASDs. A large and growing body of research has led to evidence-based FASDeducation of professionals and the public, broader prevention initiatives, andrecommended treatment approaches based on the following premises:

n Alcohol-related birth defects and developmental disabilities arecompletely preventable when pregnant women abstain from alcoholuse.

n Neurocognitive and behavioral problems resulting from prenatal alcoholexposure are lifelong.

n Early recognition, diagnosis, and therapy for any condition along theFASD continuum can result in improved outcomes.

n During pregnancy:

◦no amount of alcohol intake should be considered safe;

◦there is no safe trimester to drink alcohol;

◦all forms of alcohol, such as beer, wine, and liquor, pose similar risk;and

◦binge drinking poses dose-related risk to the developing fetus.

HISTORY AND TERMINOLOGY

Fetal alcohol spectrum disorders (FASDs) is an overarching phrase thatencompasses a range of possible diagnoses, including fetal alcoholsyndrome (FAS), partial fetal alcohol syndrome, alcohol-related birthdefects (ARBD), alcohol-related neurodevelopmental disorder (ARND),

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DOI: 10.1542/peds.2015-3113

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and neurobehavioral disorderassociated with prenatal alcoholexposure (ND-PAE). FAS refers toa clinical diagnosis based on a specificconstellation of physical, behavioral,and cognitive abnormalities resultingfrom prenatal alcohol exposure(PAE).1 By 1973, sufficient researchevidence had accrued to devise basicdiagnostic criteria such that FASbecame established as a diagnosticentity.1 The US Surgeon Generalissued the first public health advisoryin 1981 (reissued in 2005) thatalcohol during pregnancy was a causeof birth defects.2,3 In 1989, Congressmandated that alcohol productlabels include a warning aboutpotential birth defects. Nineteenstates and the District of Columbiahave now enacted laws requiringthese warnings at the point of sale,including bars and restaurants.4

As it became evident that PAEresulted in a spectrum of lifelongmanifestations, varying from mild tosevere and encompassing a broadvariety of physical defects andcognitive, behavioral, emotional, andadaptive functioning deficits, the term“fetal alcohol effects” was adoptedto describe children who had PAEmanifestations yet did not meet theFAS diagnostic criteria, primarily bylacking physical abnormalitiesassociated with FAS. Because theterm was too broad and vague forpractical clinical or epidemiologic use,it was retired from use in 1996 andreplaced with 2 pathophysiologicallybased diagnostic categories: ARBDand ARND.5–7

Despite greater public awareness,improved terminology, and anaccruing body of research, the lack ofuniformly accepted diagnostic criteriafor FAS and other related disordershas critically limited efforts todetermine accurate prevalencefigures, expand awareness andprevention campaigns, actuate earlyidentification and interventionprograms, and delineate the fullcontinuum of alcohol-related

conditions. As part of the fiscal year2002 appropriations legislation,Congress mandated that the Centersfor Disease Control and Prevention(CDC) develop diagnostic guidelinesfor FAS and related disorders andintegrate them broadly acrossmedical and allied health professions’training curricula. Under the auspicesof the CDC, acting through theNational Center on Birth Defects andDevelopmental Disabilities FASPrevention Team, in conjunctionwith the National Task Force onFetal Alcohol Syndrome and FetalAlcohol Effects, a multidisciplinaryscientific working group of keynational experts engaged in anintensive collaborative effort to drawconclusions about PAE effects.This collaborative conducteda comprehensive review of scientificand clinical evidence and extensivelyconsulted with clinicians, experts,and families to delineate cleardiagnostic criteria for FAS on the

basis of a combination of 3 cardinalfacial features, growth problems, andcentral nervous system abnormalitiesqualified by confirmed or unknownPAE (Fig 1).8 Through this effort,practical clinical approaches wereendorsed so that those children withPAE could be more readily identified,the condition could be diagnosed withgreater accuracy, and children could bereferred for appropriate services.9,10

In April 2004, the National Institutesof Health, CDC, and the SubstanceAbuse and Mental Health ServicesAdministration, along with additionalexperts in the field, were convened bythe National Organization on FetalAlcohol Syndrome to develop thefollowing consensus definition ofFASD: “FASD is an umbrella termdescribing the range of effects thatcan occur in an individual whosemother drank alcohol duringpregnancy. These effects includephysical, mental, behavioral, and/orlearning disabilities with possible

FIGURE 1Child presenting with the 3 diagnostic facial features of FAS: (1) short palpebral fissure lengths, (2)smooth philtrum (Rank 4 or 5 on the Lip-Philtrum Guide), and (3) thin upper lip (Rank 4 or 5 on theLip-Philtrum Guide). Legend written by Susan Astley, PhD. © 2015, Susan Astley PhD, Universityof Washington.

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lifelong implications. The term FASDencompasses all other diagnosticterms, such as FAS, and is notintended for use as a clinicaldiagnosis.”11

Research continued to accrue aboutARND, that is, individuals withPAE-associated neurodevelopmentaland behavioral abnormalities yetwithout the FAS facial phenotype, sothat in late 2011, the InteragencyCoordinating Committee on FetalAlcohol Spectrum Disordersorganized a consensus conference todefine ARND diagnostic criteria andrelated screening and referral needs.7

As an outgrowth of this conference,a subcommittee collaborated with theAmerican Psychiatric Association inpreparing the Diagnostic andStatistical Manual of Mental Disorders,Fifth Edition, reorganized ona neurologic disorders framework.The manual includes FASD under theterm “FAS (ND-PAE).”12 FASDterminology continues to evolve, andresearch evidence suggests thatARBD may be declining in use whileARND/ND-PAE terminology remainsincompletely defined. ND-PAE maybecome the accepted diagnostic termfor moderate PAE findings, and “staticencephalopathy” associated withPAE is a suggested diagnostic termfor severe PAE effects.13

EPIDEMIOLOGY

FASDs remain among the mostcommonly identifiable causes ofdevelopmental delay and intellectualdisability yet are generally acceptedto be vastly underrecognized. FAS,ARBD, and ARND prevalence ratesand occurrence patterns have beenthe subject of many studies since thelate 1970s. The wide variance inreported rates reflects the specificdiagnoses studied and the differentresearch methodologies used, the3 most common methodologiesbeing clinic-based studies, passivesurveillance of existing records oftenlimited to a geographic area, andactive case ascertainment

studies.14,15 Although the prevalenceof FAS in the United States during the1980s and 1990s was reported as0.5 to 2 cases per 1000 live births,recent studies aggressivelydiagnosing FASD have reported FASrates and FASD estimates of 6 to 9cases and 24 to 48 cases per 1000children (or up to 5%), respectively,while continuing to consider theserates underestimates.14–16 Ratesas high as 9 cases per 1000 live birthshave long been documentedamong vulnerable populations,usually related to isolation andsocioeconomic impoverishment,such as can be more often foundamong certain American Indianand other racial/ethnic minoritypopulations.17–19 An FAS prevalenceof 1.0% to 1.5% has been reportedamong children in foster care.20

A recent study among a populationof foster and adopted youth referredto a children’s mental health centerreported a FASD misdiagnosis rate of6.4% and a missed diagnoses rate of80.1%.21 FAS is the FASD with themost explicit diagnostic criteria,so it only represents a fraction ofindividuals affected by PAE. FASDsother than FAS are more challengingto diagnose, so the true FASDprevalence remains unknown and theactual impact underappreciated.14–16

Approximately half of all US womenof childbearing age have reportedpast month alcohol consumption, anduse ranged from sporadic intake to15% reporting binge drinking.22

Binge drinking is a pattern ofdrinking that raises a person’s bloodalcohol concentration to 0.08% orgreater and was originally defined as5 or more standard drinks peroccasion (generally within 2 hours).23

A “standard drink” containsapproximately 0.5 fluid oz of pureethanol, which is the amount found ina 1.5-oz shot of distilled spirits, 5 ozof wine, or 12 oz of beer. In 2004, theNational Institute on Alcohol Abuseand Alcoholism changed the bingedrinking definition for women to “theingestion of 4 or more drinks per

occasion” to account for knownphysiologic gender-relateddifferences affecting alcoholabsorption.24 Setting this lowerthreshold for binge drinking amongwomen also served to increaseprevalence.25 Binge drinking in thepreconception period is associatedwith unintended pregnancy anda higher likelihood of risky behaviors,including drinking duringpregnancy.26 Often, PAE isunintentional, occurring before thewoman knows that she is pregnant.Women continue to drink alcohol andbinge drink during pregnancy despitethe US Surgeon General’s warningsand their awareness that risk forpotential harm exists.27–29 Althoughmost women report cutting down orabstaining from alcohol use duringpregnancy, 7.6% of pregnant womenreport continued alcohol use, and1.4% report binge drinking.22

FASD as such is not heritable, andhaving an FASD does not increasea woman’s risk of having a child withFASD. No genetic factors are knownto be predictive of which particularchildren with PAE will have FASDs orthe extent of effects. Multiple studiesand meta-analyses have focused onhow various patterns of drinkingduring pregnancy might affectfetal and child development.30–40

Mills et al prospectively studiedapproximately 31 000 pregnanciesto determine how much alcoholpregnant women could safelyconsume and found increased risk ofinfant growth retardation even whenconsumption was limited to 1standard drink daily.30 Althougha consensus is still lacking about theeffects of low levels of PAE, harmfuleffects are well documented relatedto moderate or greater PAE and tobinge drinking.32–40 The potential forfetal harm increases as maternalalcohol consumption rises.32,40

Despite methodologic differences,potentially confounding factors,and variable sensitivity among thedetection methods applied, thesestudies support advising that the

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healthiest choice regarding alcoholuse during pregnancy is to abstain.

FASD DIAGNOSIS

Ongoing work seeks to define specificdiagnostic criteria for each ofthe FASD conditions along thecontinuum, such as has been possiblefor FAS. The FAS diagnosis is madeonly when an individual meets all 3diagnostic criteria: prenatal and/orpostnatal growth deficiency, the 3cardinal facial features (reducedpalpebral fissure length, smoothphiltrum, and thin upper vermillionlip border [Figs 2, 3, 4A, 4B and 5]),and any of a range of recognizedstructural, neurologic, and/orfunctional central nervous systemdeficits.8–10 Confirmed PAEstrengthens the evidence, but FAS canbe diagnosed without this historywhen all of the specific FAS diagnosticcriteria have been met. DiagnosingFAS also means a comprehensivehistory has documented any other inutero substance exposures, includingtobacco, medications, or illicitsubstances of abuse, and that otherpossible genetic and environmentaletiologies have been excluded,specifically Williams, Noonan, 22qdeletion syndromes, trisomy 21, andfetal toluene embryopathy, becausesome dysmorphological features areshared with FAS.41

All other FASD conditions havea range of PAE-associated findingsthat meet only some of the FASdiagnostic criteria. A computer-based

3-dimensional facial image analysis isshowing promise in identifying PAE-affected children who have cognitiveimpairments but lack the FASdiagnostic facial features.42 ARBDrefers to children with confirmedPAE and certain physical findingsrelated to congenital structuralmalformations and dysplasiasaffecting organ systems and/orspecific minor anomalies but normalneurodevelopment.10,13,31 Aconfirmed history of PAE shouldalso prompt careful developmentalscreening and assessment for ARND/ND-PAE, which is among the possiblediagnoses when there are nophysical stigmata of FAS, yetevidence of brain abnormalities,and either structural or functionalneurocognitive disabilities manifestas problems with neurodevelopment,behavior, adaptive skills, and/or self-regulation.7,9,10 Other individualswhose features meet most but not allof the diagnostic criteria for FAS aredescribed as having partial fetalalcohol syndrome. Fetal exposure toalcohol and to one or more additionalsubstances complicates the causalexplanation of clinical findingsbecause the potential teratogenic,fetal growth, and neurobehavioraleffects might be attributable toexposure to the other drug(s) alone,to multiple different exposures, or todrug combinations, including alcohol.

MEDICAL, BEHAVIORAL, AND COGNITIVEPROBLEMS

Although a classic FAS diagnostictriad has long been identified, otherfindings, including microcephaly,behavioral abnormalities, and“noncardinal” abnormal facialfeatures, such as maxillaryhypoplasia, cleft palate, ormicrognathia, are also wellrecognized to co-occur withPAE.1,41,43 A wide range ofdevelopmental and/or medicalproblems can accompany FAS asa result of alcohol’s structural and/orfunctional effects on the brain and

various other organs or systems,particularly the cardiovascular, renal,musculoskeletal, ocular, and auditorysystems.1,41,44 A growing body ofFASD research has focused ondelineating how various brain volumedeficits are related to neurocognitivefunction and facial dysmorphology,and close correlations with alcoholuse in the first trimester of pregnancyhave been found.45,46 Fetal death isthe most extreme PAE outcome, andPAE is also associated with suddeninfant death syndrome (Fig 5).33,47

Children and adolescents with knownPAE experience a variety ofbehavioral and cognitive difficulties,ranging from subtle learning and/orbehavioral problems to significantintellectual disability.10,45,48–50 PAE isassociated with a higher incidenceof attention-deficit/hyperactivitydisorder (ADHD) and specificlearning disabilities, such asmathematics difficulties.48,50–52 Theneurocognitive profile associatedwith FASDs results from deficitsin visual-spatial and executivefunctioning, including impairedimpulse control, memory skills, andproblem-solving, but also difficultieswith abstract reasoning, auditorycomprehension, and pragmaticlanguage use.45,52 PAE-associatedexecutive dysfunction is evident asslow information processing andintegration, and children with FASD

FIGURE 2The palpebral fissure length is defined by thedistance between the endocanthion (en) andexocanthion (ex) landmarks. Legend written bySusan Astley, PhD. © 2015, Susan Astley PhD,University of Washington.

FIGURE 3The palpebral fissure length (the distance fromthe inner corner to outer corner of the eye) beingmeasured with a small plastic ruler. Legendwritten by Susan Astley, PhD. © 2015, SusanAstley PhD, University of Washington.

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show deficits in cognitive planning,concept formation, set shifting, verbaland nonverbal fluency, socialinteraction skills, and peerrelationships.45,52 Because attentiondeficits are considered a commoncharacteristic of people with FASD,these skills have been extensivelyinvestigated. Children with FASD havedemonstrated attention deficiencieswith their capacity to holdinformation temporarily in memorywhile coding it or performinga mental operation on it and with theability to shift attention flexiblycompared with those with ADHD,who display greater difficulty withfocus, concentration, and staying ontask.51–53 Children and adolescentswith PAE have difficulty rapidlyprocessing relatively complexinformation and perform worse onvisual than on auditory sustainedattention tasks.54 Although a few casereports have associated extreme PAEwith autism spectrum disorders,most reports have delineatedqualitative differences in the socialdifficulties experienced by those withFAS compared with individuals withautism spectrum disorders.55,56

SECONDARY AND CO-OCCURRINGCONDITIONS

Compared with the generalpopulation, although similar to thosewith other intellectual disability,individuals with FASD have a higherincidence of concurrent psychiatric,emotional, and behavioralproblems.45,50,57–59 Children andadolescents with FASD have a 95%lifetime likelihood to experiencemental health issues, and among themost prevalent are anxiety and mooddisorders, particularly depression, aswell as ADHD, substance use,addiction, and suicide. Individualswith PAE have greater rates of schooldisruptions, trouble with the law, andunder- or unemployment.50,58,59

Failure to achieve age-appropriatesocialization and communicationskills results in maladaptive and

FIGURE 4ALip-Philtrum Guide 1 is one of two Guides (see Fig 4B) used to rank upper lip thinness andphiltrum smoothness. The philtrum is the vertical groove between the nose and upper lip. Theguide reflects the full range of lip thickness and philtrum depth observed among Caucasianswith Rank 3 representing the population mean. Ranks 4 and 5 reflect the thin lip and smoothphiltrum that characterize the FAS facial phenotype. Guide 1 is used for Caucasians and all otherraces with lips like Caucasians. This guide is available from fasdpn.org as a free digital imagefor use on smartphones. © 2015 Susan Astley, PhD, University of Washington. Legend written bySusan Astley, PhD.

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impaired social functioning.Substance use; inappropriate sexualbehaviors, such as inappropriateexposure, improper touching, andpromiscuity; and consequent legalproblems have been reported inadults diagnosed with FAS.50,59,60

Delayed diagnosis and misdiagnosiscontribute to the higher risk forsecondary and co-occurringconditions.

TREATMENT

An integrated multifactorial FASDmodel that includes genetic, PAE, andenvironmental factors, amongothers, provides an approach tounderstanding and assisting thiscomplex and diverse high-riskpopulation. FASDs have no cure,but affected individuals experienceimproved medical, psychological,and vocational outcomes throughlongitudinal intervention andtreatment that maximize protectivefactors and build capacity inidentified strengths.61–65 Multimodalsymptom treatments that improvelong-term outcomes includeoptimizing environmentalmodifications, parenting strategies,social support, and developmentaland educational interventions thataddress the neurologically basedproblems related to FASDs.61–66

Children with FASDs prescribedneuroleptic medication have shownimproved outcomes, but stimulantmedication either failed to improve orworsened ADHD symptoms.67 Theheterogeneity of FASD manifestationscalls for tailoring treatments to meetindividual needs and addressingthese constellations of lifelongdisabilities across the life span.

Washington State continues to bea national and international leader inFASD diagnostic, prevention, andintervention practices through a long-standing coordinated effort of diverseprograms focused on their collectiveFASD-associated needs and buildinga strong FASD research and evidencebasis. The 2014 recommendations

FIGURE 4BLip-Philtrum Guide 2 is one of two Guides (see Fig 4A) used to rank upper lip thinness and philtrumsmoothness. The philtrum is the vertical groove between the nose and upper lip. The guide reflectsthe full range of lip thickness and philtrum depth observed among African Americans with Rank 3representing the population mean. Ranks 4 and 5 reflect the thin lip and smooth philtrum thatcharacterize the FAS facial phenotype. Guide 2 is used for African Americans and all other races withthicker lips like African Americans. This guide is available from fasdpn.org as a free digital image foruse on smartphones. © 2015 Susan Astley, PhD, University of Washington. Legend written by SusanAstley, PhD.

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from the Washington State FetalAlcohol Spectrum DisordersInteragency Work Group highlightevidence-based practices that includeidentifying risk and protective factors,engaging early intervention,addressing the high FASD risk forsubstance abuse problems, andapplying screening-informedtreatment planning, includingneuropsychological assessment-guided treatment plans.68

Children with FASD are not explicitlydesignated to receive specialeducation services in the Individualswith Disabilities Education Act;however, some school districts serveaffected children through the “OtherHealth Impaired” category. PAE isnot specifically listed in this categorybut does qualify a child as “at risk”and eligible for early interventionservices (Part C). The developmentaland behavior difficulties in youngchildren with FASDs qualify forspecial education services (Part Cand Part B). Various school-basededucational accommodations havebeen effective in helping childrenwith FASDs reach their developmentaland educational potential, but thetransition to the posteducationalsetting and adulthood poses additional

challenges where support servicessuch as vocational training andlife skills development areneeded.50,63,65,66,68

ECONOMIC EFFECTS

The constellation of medical, surgical,behavioral, educational, custodial,judicial, and other services requiredto care for an individual with FASDresults in a large economic burden tothe individual, the family, andsociety.69 In the 1980s, the estimatedannual FAS-related expenses for theUnited States increased from $75million to $4 billion, with the lifetimecost of care approaching $1.4million.50,69,70 Cost estimates aresimilarly high in Canada but alsovary widely depending on themethodologies used.71 During 2005,children with FAS incurred averagemedical expenditures 9 times higherthan those without FAS.72 WhenFAS with intellectual disabilitywas considered in making thesecalculations, average expendituresincreased an additional 2.8 times thecosts for FAS alone.72 Because FAS isonly 1 subset of FASD, the trueeconomic effect of FASD is muchlarger. It has been documented inCanada that an FASD evaluation

requires 32 to 47 hours for 1individual to be screened, referred,evaluated, and given the diagnosis ofan FASD, resulting in a total cost of$3110 to $4570 per person.73 On thebasis of the cost of a comprehensivemultidisciplinary FASD assessmentin Canada, the total cost estimate ofall FASD screening and diagnosisranges from $3.6 to $7.3 million peryear, excluding treatment costs.73

The estimated lifetime cost of care,including social and health careservices, for each child born withFASD is up to $2.44 million.69,74 Thecalculated expense of raising a childwith FASD is 30 times the cost ofpreventing the FASD.75 In 2005, theannual Medicaid cost to care fora child with FASD was 9 times that ofa child without FASD.72

THE ROLE OF THE PEDIATRICIAN ANDTHE MEDICAL HOME

The main role of a pediatrician andthe medical home regarding FASDis to be knowledgeable about thedisorder to guide prevention, tosuspect and screen for FASD, and torecognize, manage, and refer patients.Pediatricians, medical home teammembers, and other healthprofessionals are in prime position toprovide both primary and secondaryFASD prevention education andcounseling because young women ofchildbearing age are among theirpatient population.76 Pediatriciansbuild trusted relationships with theiradolescent and young adult patientsand the parents of these patients, anda routine and expected part ofmedical home care is to discusspersonal health responsibilities,including preventing pregnancy,alcohol, and other substance use andabstaining from sexual activity. Manywomen have misconceptions aboutthe “safety” of alcohol use and asa result continue to consume alcoholduring pregnancy despite theSurgeon General’s warnings.22

Refraining from alcohol use duringpregnancy is an important message

FIGURE 5Young man presenting with the 3 facial features of FAS (small eyes, smooth philtrum, and thin upperlip) at 2 years of age and 20 years of age. Legend written by Susan Astley, PhD. © 2015, Susan AstleyPhD, University of Washington.

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to be delivered by health careproviders as a part of prenatal careand other health visits duringpregnancy. Clear guidance to correctmisunderstandings about the risks ofalcohol use during pregnancy andeducate people about the importanceof abstaining from alcohol duringpregnancy may prevent furtherPAE and related outcomes. Earliertermination of alcohol use inpregnancy is associated with feweralcohol-related complications for themother and her baby. Specifically, firsttrimester drinking (vs no drinking)produces 12 times the odds of givingbirth to a child with FASD, first andsecond trimester drinking increasesFASD odds 61 times, and drinking inall trimesters increases FASD odds65 times.77

Adolescent patient care standardsinclude providing consistent patientand family education and anticipatoryguidance about alcohol use risks,screening for alcohol use andaddiction, and intervention to addressuse and refer patients to treatment.Because adolescents who drinkalcohol while pregnant could havea child with a FASD, policies from theAmerican Academy of Pediatrics(AAP) and public domain tools areavailable to promote pediatricianskills and practices related to alcoholand other drug use screening, briefintervention, and referral totreatment.78–80

Given the prevalence in the UnitedStates of alcohol use by women whoare sexually active or pregnant,pediatricians, through the medicalhome, should maintain a high level ofsuspicion for FASD, become familiarwith FASD features, and conductscreening to detect PAE and FASDpatients as early as possible. Maternalmarkers that increase the likelihoodof a child having had PAE include themother’s past history of alcohol ordrug use problems, such as addiction,multiple drug use, a previous alcohol-exposed pregnancy, little or noprenatal care, unemployment,

a transient lifestyle, incarceration,and/or a heavily drinking partner orfamily member.60 Primary careproviders should consider thepossibility for FASD whenever a childhas suggestive physical stigmata and/or is being assessed for poor growth,developmental delays, or behavioralconcerns, including attention deficitor school failure. Any history ofadoption, especially from anenvironment of socioeconomicimpoverishment, whether domesticor international, and any history ofinvolvement with a US child socialservices system can indicate a higherlikelihood of having had PAE anda need for careful screening forFASD.21,49,81 A history of involvementwith child protective services relatedto parental substance use or tochild neglect, abuse, or abandonmentis a strong marker for risk, as isa history of any out-of-home or fostercare placement, including kinshipcare.81 Many people are not aware ofthe requirement for health careproviders to report FASD to childprotective service systems.82 The2010 reauthorization of the federalChild Abuse Prevention andTreatment Act legislation includedspecific policy revisions andmandates about FASD, including“a requirement that health careproviders involved in the delivery orcare of such infants notify the childprotective service system,” makeappropriate referrals to this systemand other services, and developa plan of safe care.82

Medical home care relevant to FASDpatients includes documenting aPAE and other substance exposurehistory and other historical details aswell as physical examination findings,diagnosing FAS in patients whenpossible, and/or referring forcomprehensive FASD assessment anddiagnostic evaluation forintervention.10,12,66 Effective medicalhome practices include optimizingthe electronic health record use tofacilitate documentation of PAEscreening as a practice routine and

integrating checklists or other tools tofacilitate coordinated collaborativecare, follow-up connections, and caretransitions. Similar to other patientswith complex conditions, those withFASDs are best served throughperiodic well-child care surveillanceand coordinated collaborative patientmanagement through referral tomedical subspecialists and otherhealth professionals to diagnose and/or manage comorbidities, facilitatingaccess to and enrollment indevelopmental and educationalservices, consultation with socialwork risk assessment services, andcoordination with legal and othercommunity resources for the childand family. Partnering with thepatient and family helps medicalhome physicians understand thislifelong diagnosis and how to manageany stigma and emotional responses,such as anger, shame, or blame thatmay arise from many sources,including themselves.62 Workingclosely with families to engage theirchild in appropriate developmentaland educational services is anongoing role, and it is important toanticipate and coordinate theeventual transition of individualswith an FASD from pediatric to adultcare services. Pediatricians may alsorefer FASD-diagnosed patients to theSupplemental Security Income (SSI)system so they can obtain incomeassistance and medical insurance.Many infants and children with FASDmay be eligible for SSI. Furthermore,SSI can help adolescents and youngadults with income support andmedical insurance beyond 26 years ofage, if not available through theirparents. Early referral to the SSIsystem is important.

Assessment of physician trainingneeds has shown that althoughpediatricians are knowledgeableabout FASD and PAE risks, theyinconsistently provide anticipatoryguidance for FASD prevention withadolescent patients and lackconfidence about integrating intoroutine practice the care management

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and treatment coordination neededby patients affected by FASDs.83,84 Toaddress these gaps, the CDC-fundedFASD Regional Training Centershave published a curriculumdevelopment guide to createtrainings for medical and alliedhealth students and providers.85

Other educational modalities andpractice tools to enhancepractitioner confidence withproviding FASD care have beencooperatively developed by theCDC and the AAP.85 Availablethrough the AAP Web site, theFASD Toolkit and clinical algorithmare among the modalities developedto guide FASD screening, diagnosis,and management in the medicalhome.

SUMMARY

There is no known absolutely safequantity, frequency, type, or timing ofalcohol consumption duringpregnancy, but having no PAEtranslates into no FASD. Despiteresearch evidence clearlydocumenting the spectrum ofdetrimental consequences of PAE,too many women continue todrink alcohol during pregnancy.Progress continues to be made inunderstanding the mechanisms ofalcohol’s deleterious effects andidentifying the most efficaciousintervention strategies for preventingand ameliorating deficits associatedwith FASDs, but each discovery alsoreveals new challenges. From aneconomic, societal, educational,family, or health or medical homeperspective, FASDs represent a majorpublic health burden.86 Thepediatrician and the medical home aswell as cooperative care withpractitioners such as obstetriciansand family medicine providers playimportant roles in the success ofFASD prevention, intervention andtreatment modalities but also in theresearch progress needed to discoveradditional means to address thelifelong consequences of FASDs.

SELECTED PUBLIC DOMAIN RESOURCES

AAP FASD Toolkit. www.aap.org/fasd

Astley SJ, Grant T. RecommendationsFrom the Washington State FetalAlcohol Spectrum Disorders In-teragency Work Group, December2014. Seattle, WA: WashingtonState Fetal Alcohol Spectrum Dis-orders Interagency Work Group.http://depts.washington.edu/fasdpn/pdfs/FASD-IAWG-Dec2014-Report.pdf

American College of Obstetricians andGynecologists. At-Risk Drinkingand Alcohol Dependence: Obstetricand Gynecological Implications.www.acog.org/Resources-And-Publications/Committee-Opinions/Committee-on-Health-Care-for-Underserved-Women/At-Risk-Drinking-and-Alcohol-Dependence-Obstetric-and-Gynecologic-Implications

Centers for Disease Control and Pre-vention. www.cdc.gov/fasd

FAS Diagnostic and Prevention Net-work. FAS Facial Photography andMeasurement Instruction (usingimages and animations to teachaccurate measurement of FAS facialfeatures). http://depts.washington.edu/fasdpn/htmls/photo-face.htm

National Dissemination Center forChildren with Disabilities. www.parentcenterhub.org/nichcy-resources (All About the IEP—Individualized EducationalProgram: www.parentcenterhub.org/repository/iep/)

National Institute on Alcohol Abuseand Alcoholism (NIAAA). www.niaaa.nih.gov• NIAAA Collaborative Initiative onFetal Alcohol Spectrum Disorders:www.cifasd.org

National Organization for FetalAlcohol Syndrome (NOFAS): www.nofas.org• NOFAS National and State Re-source Directory: www.nofas.org/resource-directory

Substance Abuse and Mental HealthServices Administration (SAMHSA),

Fetal Alcohol Spectrum Disorders(FASD) Center for Excellence:www.fascenter.samhsa.gov

Substance Abuse and Mental HealthServices Administration. Address-ing Fetal Alcohol SpectrumDisorders (FASD). TreatmentImprovement Protocol (TIP) Series58. HHS Publication No. (SMA)13-4803. Rockville, MD: SubstanceAbuse and Mental Health ServicesAdministration, 2014. http://store.samhsa.gov/product/TIP-58-Addressing-Fetal-Alcohol-Spectrum-Disorders-FASD-/SMA13-4803

SAMHSA Treatment Locator: www.samhsa.gov/treatment/index.aspx

LEAD AUTHORS

Janet F. Williams, MD, FAAPVincent C. Smith, MD, MPH, FAAP

COMMITTEE ON SUBSTANCE ABUSE,2014–2015

Sharon Levy, MD, MPH, FAAP, ChairpersonSeth D. Ammerman, MD, FAAPPamela K. Gonzalez, MD, FAAPSheryl A. Ryan, MD, FAAPLorena M. Siqueira, MD, MSPH, FAAPVincent C. Smith, MD, MPH, FAAP

FORMER COMMITTEE MEMBER

Janet F. Williams, MD, FAAP

LIAISONS

Vivian B. Faden, PhD – National Institute of Alcohol

Abuse and Alcoholism

Gregory Tau, MD, PhD – American Academy of Child

and Adolescent Psychiatry

STAFF

Renee Jarrett, MPH

CONTRIBUTORS

Council on Children With Disabilities

Sandra L. Friedman, MD, MPH, FAAP

Fetal Alcohol Spectrum Disorders ExpertPanel – AAP/CDC Cooperative Agreement

Philip John Matthias, MD, FAAPPaul Seale, MDYasmin Suzanne Nable Senturias, MD, FAAPVincent C. Smith, MD, MPH, FAAPRenee M. Turchi, MD, MPH, FAAPDavid Wargowski, MDJanet F. Williams, MD, FAAP

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Liaisons

Jacquelyn Bertrand, PhD – Centers for Disease

Control and Prevention

Elizabeth Parra Dang, MPH – Centers for Disease

Control and Prevention

Jeanne Mahoney – American College of Obstetricians

and Gynecologists

STAFF

Rachel Daskalov, MHAFaiza Khan, MPH

ABBREVIATIONS

AAP: American Academy ofPediatrics

ADHD: attention-deficit/hyperactivity disorder

ARBD: alcohol-related birth defectARND: alcohol-related

neurodevelopmentaldisorder

CDC: Centers for Disease Controland Prevention

FAS: fetal alcohol syndromeFASD: fetal alcohol spectrum

disorderND-PAE: neurobehavioral disorder

associated with prenatalalcohol exposure

PAE: prenatal alcohol exposure

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