Appendix_K_Pediatrics FAS Survey Article

Pediatricians' Knowledge, Training, and Experience in the Care of Children
With Fetal Alcohol Syndrome
Sheila Gahagan, Tanya Telfair Sharpe, Michael Brimacombe, Yvonne Fry-Johnson,
Robert Levine, Mark Mengel, Mary O'Connor, Blair Paley, Susan Adubato and
George Brenneman
Pediatrics 2006;118;657-668
DOI: 10.1542/peds.2005-0516

This information is current as of September 1, 2006

The online version of this article, along with updated information and services, is
located on the World Wide Web at:
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PEDIATRICS is the official journal of the American Academy of Pediatrics. A monthly
publication, it has been published continuously since 1948. PEDIATRICS is owned, published,
and trademarked by the American Academy of Pediatrics, 141 Northwest Point Boulevard, Elk
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ARTICLE

Pediatricians’ Knowledge, Training, and Experience
in the Care of Children With Fetal Alcohol Syndrome
Sheila Gahagan, MD, MPHa, Tanya Telfair Sharpe, PhDb, Michael Brimacombe, PhDc, Yvonne Fry-Johnson, MDd, Robert Levine, MDe,
Mark Mengel, MD, MPHf, Mary O’Connor, PhDg, Blair Paley, PhDg, Susan Adubato, PhDh, George Brenneman, MDi
aCenter for Human Growth and Development, University of Michigan, Ann Arbor, Michigan; bFetal Alcohol Syndrome Prevention Team, National Center on Birth Defects
and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, Georgia; cDepartments of Preventive Medicine and hPediatrics, University of
Medicine and Dentistry of New Jersey, Newark, New Jersey; dNational Center for Primary Care, Morehouse School of Medicine, Atlanta, Georgia; eMeharry Medical
College, Nashville, Tennessee; fDepartment of Community and Family Medicine, St Louis University School of Medicine, St Louis, Missouri; gDepartment of Psychiatry and
Biobehavioral Sciences, David Geffen School of Medicine, University of California at Los Angeles, Los Angeles, California; iUS Public Health Service (Retired), Rockville,
Maryland, and Committee on Native American Child Health, American Academy of Pediatrics, Elk Grove Village, Illinois

The authors have indicated they have no financial relationships relevant to this article to disclose.

ABSTRACT
OBJECTIVES. Prenatal exposure to alcohol interferes with fetal development and is the
leading preventable cause of birth defects and developmental disabilities. The
purpose of this study was to identify current knowledge, diagnosis, prevention,
and intervention practices related to fetal alcohol syndrome and related conditions
by members of the American Academy of Pediatrics.
METHODS. This study was developed collaboratively by the American Academy of

Pediatrics and the Centers for Disease Control and Prevention. Questionnaires
were mailed to a 3% random sample (n ⫽ 1600) of American Academy of
Pediatrics members in the United States. General pediatricians, pediatric subspecialists, and pediatric residents were included.
RESULTS. Participation rate was 55% (n ⫽ 879). Respondents almost universally

knew the teratology and clinical presentation of fetal alcohol spectrum disorders.
However, they were less likely to report comfort with routine pediatric care of
these children. Whereas 62% felt prepared to identify and 50% felt prepared to
diagnose, only 34% felt prepared to manage and coordinate the treatment of
children with fetal alcohol spectrum disorders. Even fewer (n ⫽ 114 [13%])
reported that they routinely counsel adolescent patients about the risks of drinking
and pregnancy.
CONCLUSIONS. The survey confirms that pediatricians are knowledgeable about fetal

alcohol syndrome but do not feel adequately trained to integrate the management
of this diagnosis or prevention efforts into everyday practice. Furthermore, the
respondents were not active in routine anticipatory guidance with adolescents for
prevention of alcohol-affected pregnancies. The development, dissemination, and
implementation of best practice tools for prevention, diagnosis, and referral of fetal

www.pediatrics.org/cgi/doi/10.1542/
peds.2005-0516
doi:10.1542/peds.2005-0516
The contents of this article are solely the
responsibility of the authors and do not
necessarily represent the official views of
the Centers for Disease Control and
Prevention.
Key Words
fetal alcohol syndrome, developmental
disabilities, medical home, alcohol
Abbreviations
FAS—fetal alcohol syndrome
CDC—Centers for Disease Control and
Prevention
IOM—Institute of Medicine
AAP—American Academy of Pediatrics
FASD—fetal alcohol spectrum disorders
ARND—alcohol-related
neurodevelopmental disorder
ARBD—alcohol-related birth defects
Accepted for publication Mar 20, 2006
Address correspondence to Sheila Gahagan,
MD, MPH, 300 NIB #1008 SW, Center for
Human Growth and Development, University
of Michigan, Ann Arbor, MI 48109-0406. Email: sgahagan@umich.edu
PEDIATRICS (ISSN Numbers: Print, 0031-4005;
Online, 1098-4275). Copyright © 2006 by the
American Academy of Pediatrics

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alcohol syndrome that are specific for general and subspecialist pediatricians are recommended.

I

NTRAUTERINE EXPOSURE TO alcohol interferes with fe-

tal development and is the leading preventable cause
of birth defects and developmental disabilities.1–3 Fetal
alcohol syndrome (FAS) first was described in the United
States in 1973.4,5 Individuals with FAS have 3 hallmark
characteristics: central nervous system dysfunction, facial dysmorphology, and growth deficiency.6–10 Prenatal
alcohol exposure has been associated with cardiac, skeletal, renal, brain, ocular, and auditory anomalies.4,5,11 In
the past 30 years, it has become clear that the constellation of sequelae represents a spectrum of disorders that
range from very mild to very severe.12
Despite solid basic science elucidating the pathophysiology of FAS and efforts to raise public awareness of
potential fetal damage, ⬃13% of pregnant US women
drink alcohol.2,3,13–15 Furthermore, drinking alcohol and
sexual activity commonly co-occur during adolescence.16
The Centers for Disease Control and Prevention (CDC)
estimates that FAS is present in 1 per 1000 live births in
the United States.17–20 This is equivalent to the incidence
of trisomy 21 and 4 times as common as congenital
hypothyroidism.21,22 Identification of FAS may be more
challenging than identifying other congenital conditions
because the diagnosis rests on history of maternal drinking, physical examination characteristics, and behavioral
symptoms, without any confirmatory laboratory test.23
There has been extensive work and debate toward the
establishment of diagnostic criteria.6–8,24–27 The 1996 report by the Institute of Medicine (IOM; published by the
National Academy of Sciences; Table 1),6 the 2000
American Academy of Pediatrics (AAP) statement,7 the
2004 guidelines for diagnosis and referral published by
the CDC,24 and the University of Washington diagnostic
criteria8 all are valuable resources, but lack of uniform
terminology increases the challenge for clinicians. To
address difficulties in the practical application of existing
diagnostic guidelines, Hoyme et al27 proposed and studied revisions to the 1996 IOM diagnostic criteria in 1500
children. The CDC’s “Guidelines for Identifying and Referring Persons With Fetal Alcohol Syndrome” adds criteria for documentation of structural, neurologic, and
functional central nervous system abnormalities.28

TABLE 1 IOM Diagnostic Categories
FAS
FAS with maternal alcohol exposure
FAS without confirmed maternal alcohol exposure
Partial FAS with confirmed maternal alcohol exposure
Alcohol-related effects
ARBD
ARND

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Child health professionals do not always consider prenatal alcohol exposure in the differential diagnosis of
behavioral and learning problems.29–34 Some clinicians
are reluctant to screen for FAS because of time constraints, fear of litigation, lack of available treatment, or
fear of stigmatization for mothers and affected children.25,35 Even behavioral experts may not consider prenatal alcohol exposure when assessing developmental
problems. For example, FAS is not mentioned in the
attention-deficit/hyperactivity disorder toolkit developed by the AAP and the National Initiative for Child
Health Quality.36 Similarly, FAS was not included in the
curriculum for the Developmental/Behavioral Pediatrics
Review and Education Program course sponsored by the
AAP in 2002 and 2004.
This survey was designed to improve understanding
of current knowledge, practices, and educational needs
of child health professionals related to fetal alcohol spectrum disorders (FASD). AAP policy on FAS and alcoholrelated neurodevelopmental disorder (ARND) states,
“Infants and children with a suspected diagnosis of FAS,
ARND, or ARBD [alcohol-related birth defects] should
be evaluated by a pediatrician who is knowledgeable and
competent in the evaluation of neurodevelopmental and
psychosocial problems associated with the diagnoses.
The need for a skilled evaluation at an early age necessitates referral to a pediatric medical specialist as well as
referral to early intervention and education agencies
providing services under the provisions of the Individuals With Disabilities Education Act.”7
METHODS
Instrument
The survey in Fig 1 was developed collaboratively by the
AAP, CDC, and representatives from 4 recently established CDC-FAS regional training centers. A team of
scientists from these organizations reviewed the scientific literature and existing FAS surveys and developed
content areas for the survey. Two practitioner surveys
with demonstrated reliability and validity from previous
studies were used as models.14,34 The survey was sponsored by a cooperative agreement with the National
Center on Birth Defects and Developmental Disabilities.
An exempt approval by the AAP Investigational Review
Board was based on the lack of identifiable information
linking human subjects to their responses on the survey.
The AAP administered the survey.
Sample
Questionnaires were mailed in April 2003 to a sample of
1600 AAP members generated by applying a randomsample generator to ⬃48 580 members in the 50 United
States. Approximately 80% of US board-certified pediatricians belong to the AAP. General pediatricians, pediatric subspecialists, and pediatric residents were in-

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FIGURE 1
FAS survey.

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cluded. A second mailing was sent to participants who
did not complete the first questionnaire to improve the
response rate.
Statistical Analysis
Data from the survey were double-data entered into
Excel for data analysis, including means and frequencies
of responses to survey questions. Comparisons between
groups of physicians (general pediatricians, subspecialists, and residents) were made using t tests for continuous data and Pearson ␹2 tests for categorical data.
RESULTS
Of the 1600 surveys mailed, we received 879, for a total
response rate of 55%. Respondents were on average 43
years of age; 52% were female and 75% were white, and
they had been in practice a mean of 12 years (all similar
to the average membership of the AAP). They represented all US geographic areas (northeast, southeast,
midwest, southwest, and northwest). Pediatric subspecialists represented 27% of the respondents compared
with 20% of AAP membership (P ⬍ .001). Pediatric
residents composed 13% of the respondents (11% of
AAP membership; P ⬍ .001). Responses from pediatric
residents, subspecialists, and general pediatricians differed little. Differences between these groups are noted
in results. We report on selected survey responses.
Those surveyed were likely to respond correctly to
most general knowledge questions (Table 2). However,
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only half accurately estimated the prevalence of FAS
(question 2). General pediatricians were more likely
than residents or subspecialists to know the estimated
birth incidence of FAS (P ⬍ .01), and occasional drinking
was considered safe by 16% of respondents (question 3).
Of this group, 19% thought that occasional drinking was
safe during the first trimester, 52% during the second
trimester, and 98% during the third trimester. Respondents were unlikely to know the accepted definition for
heavy drinking (questions 4 and 5).* Pediatricians who
had been in practice for ⱕ5 years were more likely to
select the correct threshold for binge drinking (4 –5
drinks per occasion) compared with those who had been
in practice longer (P ⬍ .05). Most were aware of a
poverty–FAS link, but residents were more likely than
those in practice to know that FAS rates are increased in
disadvantaged economic and cultural/ethnic groups
(question 6; P ⬍ .001).
More than 80% of respondents gave correct responses concerning alcohol’s effect on fetal development, prenatal alcohol exposure and brain damage, alcohol withdrawal, and the link between early diagnosis
and prevention of secondary disabilities (question 7).
Almost all respondents correctly identified FAS-associ* At the time of this survey, the CDC, the IOM, and the University of Washington defined heavy
drinking as 5 or more drinks per week and binge drinking as 5 or more drinks per occasion. In
2004, The National Institute on Alcoholism and Alcohol Abuse revised the screening definition
for “heavy drinking” for women to 4 or more drinks in 1 day and 8 drinks in 1 week.37 The CDC
currently uses the following definition of risk drinking: 7 or more drinks per week, 3 or more
drinks on multiple occasions, or both.28

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TABLE 2 Selected Survey Responses
Survey Question
General Knowledge
2
6
6
7
7
7
7
7
8
8
8
8
8
8
8
8
10
Clinical experience during past 12 mo
13
13
13
13

Correct Response

% Correct
Response

Prevalence 1/1000 live births
Higher rates with poverty
Higher rates in minorities, including Native Americans
Alcohol’s effect on fetal development is clear
Prenatal alcohol risk for permanent brain damage
Alcohol withdrawal not worst outcome of fetal exposure
Young adults with FAS do not usually achieve
independence at the expected time (18–21 y)
Early diagnosis and surveillance may lead to secondary
prevention of disabilities
Delayed development
Birth defects/malformations
Psychiatric (DSM-IV) disorders
Lowered IQ/retardation
Behavioral problems
Low birth weight
Long-term emotional problems
Attention-deficit/hyperactivity disorder
Easiest developmental period to diagnose FAS is early
childhood

53
58
68
80
92
86
71

Suspected possible FAS
Recognized FAS
Referred to confirm diagnosis of FAS
Provided care for a child with FAS

86
99
96
86
99
97
90
82
75
57
% With ⱖ1 Patient
42
20
18
34

DSM-IV indicates Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition.

ated morbidity and facial features (questions 8 and 9).
Approximately half (57%) of the respondents correctly
perceived early childhood as the optimal period to diagnose FAS, whereas approximately one quarter (28%)
perceived the newborn period as the optimal time (question 10).
Alcohol history was not always addressed. More than
half (65%) believed that the diagnosis of FAS stigmatizes
the child and the family (question 11). Most respondents
did not routinely address the consequences of alcohol
use during pregnancy with adolescent female patients,
and 45% never addressed this topic (question 12).
Actual clinical experience with children with FAS was
reported by fewer than half of the respondents (question
13). Very few (13%) respondents reported using standardized criteria for the diagnosis of FAS in their clinical
practice (question 14). Only 4 pediatricians reported
using the IOM criteria. However, an additional 99 pediatricians, or 85% of those who used any criteria, reported that they used the AAP criteria.7 When asked
why many providers do not make the diagnosis of FAS
in their practice, most (77%) cited lack of training (question 15). Only 29% reported lack of time as a barrier.
Few (14%) believed that having a diagnosis does not
make a difference to the individual child. (Respondents
were allowed to pick ⬎1 answer.)
With respect to training, most (72%) reported attending postgraduate training on the features of FAS, and

70% reported some formal training on indications for
referral for additional evaluation (question 16). Only
28% reported any training on selection of valid and
reliable assessment instruments for screening or diagnosis of FAS. Approximately half reported training in
screening patients for risky drinking, and 69% had received training for education of pregnant women about
the adverse prenatal effects of alcohol on the fetus. Only
3% of surveyed pediatricians reported that they had
received excellent formal training on the diagnosis and
treatment of FAS. Finally, more than half of the respondents reported having had no training in treatment and
management, community resources, effective communication, protecting confidentiality, and conducting alcohol cessation interviews. Whereas 62% of respondents
reported that they felt prepared to identify possible FAS,
somewhat fewer (50%) felt prepared to make the diagnosis (question 18). Even fewer (34%) felt prepared to
manage and coordinate treatment of children with FAS.
The pediatricians surveyed largely (⬎85%) endorsed all
of the educational methods proposed as potentially helpful (questions 19 and 20).
DISCUSSION
Population-based prevention, secondary prevention,
screening, and referral for FAS diagnosis and intervention can be improved by adequate training of pediatricians and other child health professionals. AAP members
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who responded to this survey generally were knowledgeable about basic science, clinical signs, symptoms,
and epidemiology of FAS. They were less prepared to use
diagnostic guidelines, refer for specialty consultation, or
coordinate treatment for children with FAS. Pediatricians surveyed infrequently encountered children with
FAS. This is not surprising because the combined US rate
of FAS, ARND, and ARBD is estimated to be 9 per 1000
live births.38 On the basis of these estimates and an
average patient panel of 1500 patients and 50 to 100
newborns per year, a general pediatrician would expect
to care for 1 to 2 children with FAS and 9 to 18 children
with ARND or ARBD over a practice career. Pediatricians
in high-risk practices could expect to care for more children with FASD.30,39–45
Controversy exists about who should make the definitive diagnosis. Pairing early detection and ongoing
management by the primary care physician with specialty consultation is a model that holds promise. Although facial features often are distinctive, dysmorphologists are experts on other syndromes that mimic
FAS. Neurobehavioral morbidity is most troubling for
patients and their families. Unfortunately, neurobehavioral symptoms are less specific, and it is especially difficult to diagnose ARND in nonsyndromal children.
Nonetheless, children with identified behavioral and
learning problems need intervention regardless of
whether they meet diagnostic criteria for FASD. Neurobehavioral specialists can assist with diagnosis and
treatment of comorbid mental health disorders. In addition, all 50 states have identified multidisciplinary evaluation clinics for FASD, listed on the National Organization on Fetal Alcohol Syndrome Web site.46 The
diagnostic evaluation is only the first step in the care of
children with FAS. Pediatricians are called on to provide
a medical home for these children, coordinate appropriate mental health services, provide consultation to special education programs, and manage medications for
attention-deficit/hyperactivity disorder and other comorbid mental health disorders. Furthermore, primary
care clinicians (pediatricians, family physicians, and obstetricians) can play an important role in primary prevention of alcohol-exposed pregnancies.
Barriers to diagnosing FAS include inconsistent
knowledge, infrequent use of guidelines, beliefs about
potential harm caused by the diagnosis, and paucity of
intervention. Pediatricians were not uniformly aware of
accepted definitions for binge and heavy drinking. Furthermore, several respondents gave examples of their
own or their children’s exposure to very small amounts
of alcohol prenatally with no apparent adverse effects.
Although guidelines rarely were used by respondents,
the modifications to the IOM diagnostic criteria, proposed by Hoyme et al,27 may increase the use of a diagnostic guideline by both generalists and specialists. A
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posure and neurobehavioral symptoms could improve
the usefulness of this tool. Although many pediatricians
surveyed believed that an FASD diagnosis stigmatizes
the child and the family, this is not known. If the diagnosis (rather than the condition) stigmatizes the child
and the family, then strategies could be developed to
assist families with this secondary burden. Surveyed pediatricians expressed reluctance to concentrate efforts on
diagnosing an untreatable condition. Future medical education should include known benefits of early diagnosis
and intervention for children with FAS, such as the
potential for preventing secondary disabilities.30
Pediatricians provide ongoing care and management
for many children with complex medical, behavioral,
and mental conditions. However, they do not always
perform the definitive diagnostic evaluation for lowprevalence, high-severity conditions. We suggest that
pediatricians consider FAS when evaluating microcephaly, intrauterine growth retardation, developmental
problems, hyperactivity, behavioral problems, and
school failure. FASD or an alcohol-related disorder will
provide a unifying diagnosis in a small percentage of
these more common conditions. Primary care pediatricians in remote areas and those whose practices include
children in foster care, internationally adopted children,
children on some Indian reservations, and other communities with high alcohol use may be expert in the
diagnosis of FASD. In other practice settings, referral to
specialists (geneticists, developmental-behavioral pediatricians, and neurologists) for additional evaluation is
recommended. Diagnosis is only the first step for children with FAS and their families. Like other children
with complex medical or behavioral disabilities, children
with FAS need a pediatric medical home to provide and
coordinate care and ensure necessary medical, behavioral, social, and educational services.
Few providers reported counseling adolescent patients about alcohol use and pregnancy. We suspect that
it is difficult to identify which adolescent girls are at risk
for combined pregnancy and alcohol use. Furthermore,
clinicians are called on to provide more public health
information than is possible during the limited health
care maintenance visit. The list includes prevention of
smoking, substance use, unintentional injuries, sexually
transmitted diseases, and more. Effective strategies for
teaching adolescents and their families about the combined risk of alcohol and pregnancy could be developed
for media, schools, or health care systems. Research to
determine whether prevention messages should be universally delivered or targeted toward teens with identifiable risk for pregnancy and alcohol use is needed.
Our study has several limitations. Although the 55%
response rate is consistent with normative values for
physician survey research47,48 and respondents generally
represented members of the AAP, our findings may not
represent all pediatricians. Self-reported attitudes and

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practices may be confounded by social desirability bias,
such that respondents overestimate their services. It is
possible that pediatricians with greater interest in FAS
were more likely to complete the survey. Furthermore,
pediatricians may not be able to estimate accurately the
number of children in their practices with alcohol-related conditions.
CONCLUSIONS
AAP members who responded to this survey were
knowledgeable about FAS. However, they reported inadequate training for actual clinical diagnosis, referral,
and management. Respondents were unlikely to engage
in primary prevention education for FAS with their adolescent patients. Translational research to move from
scientific knowledge of teratology and epidemiology to
practical tools for the child health professional could
result in increased prevention, diagnosis, referral, and
intervention for FAS.
ACKNOWLEDGMENTS
The survey was supported by a cooperative agreement
(U59/CCU521266) between the AAP and the CDC.
We acknowledge the following people for contributions to survey design, piloting, and feedback throughout the survey and writing process: Barbie ZimmermanBier, MD, Taleria R. Fuller, PhD, Danny Wedding, PhD,
Margaret S. Ulione, PhD, Stephen Braddock, MD, Kevin
P. Rudeen, PhD, Margaret Stuber, MD, Jorge Rosenthal,
PhD, R. Louise Floyd, DSN, and Elizabeth P. Dang, MPH.
Their input and expertise were invaluable throughout
the process.
We also thank Yulee Lee, MPP, who was involved
with the development and administration of the survey
and with the aggregation and analysis of the data; Jill
Ackermann for assistance throughout the article submission process; and Jyothi Nagaraja of the Battelle Research Institute for conducting the data analysis.
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Pediatricians' Knowledge, Training, and Experience in the Care of Children
With Fetal Alcohol Syndrome
Sheila Gahagan, Tanya Telfair Sharpe, Michael Brimacombe, Yvonne Fry-Johnson,
Robert Levine, Mark Mengel, Mary O'Connor, Blair Paley, Susan Adubato and
George Brenneman
Pediatrics 2006;118;657-668
DOI: 10.1542/peds.2005-0516
This information is current as of September 1, 2006
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