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Executive Summary
Pages 1-16

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From page 1...
... Congress mandated in Section 705 of Public Law 102-321, the ADAMHA Reorganization Act, that the Institute of Medicine (IOM) of the National Academy of Sciences conduct a study of FAS and related birth defects.
From page 2...
... DIAGNOSIS AND CLINICAL EVALUATION OF FETAL ALCOHOL SYNDROME A medical diagnosis serves several major purposes: to facilitate communication among clinicians; to facilitate communication between clinician and patient (including, in this instance, the parents of patients) ; to assist in the study of pathophysiology and etiology; and to guide treatment.
From page 3...
... . Diagnostic categories 4 and 5 include clinical conditions for which clinical or animal research has linked maternal alcohol ingestion to an observed outcome.
From page 4...
... Evidence of a complex pattern of behavior or cognitive abnormalities that are inconsistent with developmental level and cannot be explained by familial background or environment alone, such as learning difficulties; deficits in school performance; poor impulse control; problems in social perception; deficits in higher level receptive and expressive language; poor capacity for abstraction or metacognition; specific deficits in mathematical skills; or problems in memory, attention, or judgment Alcohol-Related Effects Clinical conditions in which there is a history of maternal alcohol exposure, and where clinical or animal research has linked maternal alcohol ingestion to an observed outcome. There are two categories, which may co-occur.
From page 5...
... Evidence of a complex pattern of behavior or cognitive abnormalities that are inconsistent with developmental level and cannot be explained by familial background or environment alone, such as learning difficulties; deficits in school performance; poor impulse control; problems in social perception; deficits in higher level receptive and expressive language; poor capacity for abstraction or metacognition; specific deficits in mathematical skills; or problems in memory, attention, or judgment aA pattern of excessive intake characterized by substantial, regular intake or heavy episodic drinking. Evidence of this pattern may include frequent episodes of intoxication, development of tolerance or withdrawal, social problems related to drinking, legal problems related to drinking, engaging in physically hazardous behavior while drinking, or alcohol-related medical problems such as hepatic disease.
From page 6...
... Key Recommendations Research recommendations include · research to evaluate the utility, reliability, and validity of this scheme for classification and diagnosis; · research, both cross-sectional and longitudinal, to assess the characteristics and clinical expression of these syndromes across the life span, particularly after adolescence; · investigation of the differences in expression and specificity of behavioral and cognitive deficits in FAS and ARND; · further clinical research, as well as research using animal models, to examine the adverse developmental effects of prenatal alcohol exposure, and to develop more specific biologic markers for diagnosis (e.g., biomarkers to confirm maternal alcohol exposure, endocrine signals, imaging techniques)
From page 7...
... The populations studied in epidemiologic studies of maternal alcohol abuse frequently do not include sufficient women who abuse alcohol at levels that produce offspring with FAS. Population-based studies can assist in addressing some of the criticisms of passive surveillance systems and may be useful for linking identified individuals to treatment programs and for evaluating comprehensive prevention efforts.
From page 8...
... Although researchers have seen some encouraging changes in drinking patterns during pregnancy over the years, there is no substantive evidence of any change in drinking behavior among women who drink more heavily or abuse alcohol, either in terms of proportions of heavy drinkers at the time of conception or in terms of consumption levels during pregnancy. Current clinic-based studies of drinking in pregnant women include relatively small numbers of women who are heavier drinkers, alcohol abusers, or alcohol dependent and few studies of drinking during pregnancy assess personality or social-environmental variables associated with drinking.
From page 9...
... The universal prevention message for FAS is a conservative one that encourages abstinence prior to conception and throughout pregnancy as the safest alternative. One of the basic techniques used in universal prevention is public education.
From page 10...
... Indicated prevention of FAS includes treatment for alcohol abuse or dependence for a pregnant woman or for a woman highly likely to become pregnant. The committee identified little controlled research into the most effective ways to treat pregnant women who drink.
From page 11...
... Indicated Prevention Interventions · The committee recommends that a high priority be placed on research efforts to design, implement, and evaluate prevention interventions that can effectively guide pregnant women who drink heavily to alcohol treatment. Research or programs should also include: · assessment of methods to involve women's partners and family members in interventions to decrease or stop drinking; .
From page 12...
... · Where the utility of specific intervention programs has been established, the committee recommends broad implementation of successful prevention interventions. Programs developed or studied should include the following: intervention targeted to specific demographic groups that have been demonstrated to be at higher risk for FAS, ARBD, and ARND, as well as those who exhibit risk factors associated with moderate to heavy alcohol consumption dur~ng pregnancy.
From page 13...
... Effects of prenatal exposure appear to become more significant later in the child's development, perhaps due to the nature of a disorder that may Affect behaviors associated with more mature social functioning. The second significant question is whether developmental problems seen in alcohol-exposed children should be attributed solely to the effects of the teratogen on neurological functioning, solely to the effects of environmental factors such as social class and dysfunctional families, or to some combination of the two.
From page 14...
... In addition to medical and educational interventions directed at affected individuals, other strategies have been considered to improve outcomes for alcohol-affected children and adults. Research suggests that few professionals working with children have adequate training in identifying and treating the effects of fetal alcohol exposure in children, although some programs that have provided professional education have been successful.
From page 15...
... research to distinguish the role of the postnatal environment in modifying the effects of fetal alcohol exposure, including research on adopted versus nonadopted children with these disorders; · research on the social and emotional status of school age children affected by FAS, ARND, or ARBD and research on the existence of specific impairments associated with these syndromes, particularly impairments in attention, language, sensory integration, and other behavioral problems; · evaluation of the effectiveness of educational interventions on children with FAS, ARND, or ARBD, possibly beginning with the examination of educational interventions that look promising in case studies or in studies of children exposed to illicit drugs in utero. INTEGRATION AND COORDINATION There is no single, organized discipline within medicine that can, at this time, logically be held responsible or accountable for the development of a comprehensive approach to preventing and treating fetal alcohol syndrome (FAS)
From page 16...
... At the same time, prevention and treatment of secondary disabilities associated with FAS, ARND, and ARBD, as well as prevention and treatment of alcohol abuse and dependence by pregnant women and by women at risk of becoming pregnant, should be a high, and long-term, priority of this coordinating body. Additional important areas of focus should include consideration of basic research and communication among the basic and clinical research communities and the health services community.


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