Pediatricians' Knowledge, Training, and Experience in the Care of Children With Fetal Alcohol Syndrome
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 alcohol syndrome that are specific for general and subspecialist pediatricians are recommended.
Intrauterine exposure to alcohol interferes with fetal 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
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 alcohol-related 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
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.
Questionnaires were mailed in April 2003 to a sample of 1600 AAP members generated by applying a random-sample generator to ∼48580 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 included. A second mailing was sent to participants who did not complete the first questionnaire to improve the response rate.
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 χ2 tests for categorical data.
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, 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 ≤5 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-associated 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).
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 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 concise standardized approach to assessing alcohol exposure 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 low-prevalence, 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 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.
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.
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 Zimmerman-Bier, 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.
- Accepted March 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. E-mail:
The authors have indicated they have no financial relationships relevant to this article to disclose.
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.
↵* 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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- ↵US Department of Health and Human Services, Substance Abuse and Mental Health Services Administration, Center for Substance Abuse Prevention, FASD Center for Excellence. US regional town hall meetings on fetal alcohol spectrum disorders. Available at: www.fascenter.samhsa.gov/documents/FASDTownHallReport.pdf. Accessed July 17, 2006
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- Copyright © 2006 by the American Academy of Pediatrics