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Fetal alcohol spectrum disorder.

Fetal alcohol spectrum disorder (FASD) is a serious and widespread problem in this country. Positioned within the community with links to children, families, and healthcare systems, school nurses are a critical element in the prevention and treatment of those affected by fetal alcohol spectrum disorder. Although most school nurses are familiar with fetal alcohol syndrome (FAS) and the problems it poses, they may not be familiar with the newer term, fetal alcohol spectrum disorder. This article summarizes the most recent information about FASD and recently published guidelines on diagnostic criteria for FAS. Also outlined are primary, secondary, and tertiary prevention activities school nurses can take to help assure that children, families, and communities work to prevent the problem and to treat the children affected by it.

Abnormalities, Drug-Induced↗

The Family Empowerment Network: a service model to address the needs of children and families affected by Fetal Alcohol Spectrum Disorders.

Fetal Alcohol Spectrum Disorders (FASD) represent a leading cause of mental retardation and learning disabilities in children seen in pediatric offices today. This article provides an overview of FASD and describes a model program, the Family Empowerment Network (FEN). FEN is an information, referral, and support network for children and families affected by Fetal Alcohol Spectrum Disorders (FASD) and the professionals who serve them. FEN's mission includes: (a) increasing awareness about FASD by providing education, training and resources to families, providers, and the general public; (b) providing support and referrals to families affected; and (c) increasing opportunities for diagnosis and intervention. We hope to increase awareness of the resources available to nurses and their patients and provide a template that can be replicated in other service delivery systems. Pediatric nurses are in a unique position not only to assist in the recognition of children at risk of FASD, to link families to appropriate diagnostic and intervention services, but also to work to develop additional local and regional resources with other providers.

Adolescent↗

Cost of fetal alcohol spectrum disorders.

Fetal alcohol syndrome (FAS) is a common identifiable teratogenic cause of mental retardation, neurological deficit, mental disorders, and developmental disabilities. Accurate estimates of the cost of care for persons with FAS are essential for appropriate funding of health care, developmental disabilities services, special education, and other service systems, as well as prioritizing funding of public health prevention efforts. The cost of care for individuals with FAS can be conceptualized as the annual cost of care for one person or a population, or as the lifetime cost of care for an individual. Annual cost estimates for the United States range from $75 million in 1984 to $4.0 billion in 1998. Estimates of lifetime cost vary from $596,000 in 1980 to $1.4 million in 1988. After adjustments for changes in inflation and population, 2002 estimates of total annual cost and lifetime cost are higher. FAS is increasingly being recognized as a large public health problem with high potential for the prevention of future cases and for the prevention of excess disability and premature mortality in persons who are affected. Each day, from 6-22 infants with FAS are born in the United States, and as many as 87-103 more are born with other impairments resulting from prenatal alcohol exposure. Updated and improved cost data on FAS should be a research priority.

Alcohol Drinking↗

A pilot community intervention for young women with fetal alcohol spectrum disorders.

Fetal Alcohol Syndrome, a permanent birth defect caused by maternal alcohol use during pregnancy, is a leading preventable cause of mental retardation. Neuropsychological deficits have been well documented, however interventions developed have not been evaluated. We describe a successful 12-month community pilot intervention with 19 young women with Fetal Alcohol Spectrum Disorders (FASD). Improved outcomes (including decreased alcohol and drug use, increased use of contraceptives and medical and mental health care services, and stable housing) were obtained by implementing a community intervention model of targeted education and collaboration with key service providers, and by using paraprofessional advocate case managers as facilitators.

Adolescent↗

A controlled social skills training for children with fetal alcohol spectrum disorders.

Children with fetal alcohol spectrum disorders (FASD) have significant social skills deficits. The efficacy of a child friendship training (CFT) versus a delayed treatment control (DTC) was assessed for 100 children ages 6 to 12 years with FASD. Children in the CFT showed clear evidence of improvement in their knowledge of appropriate social behavior, and according to parent report, CFT resulted in improved social skills and fewer problem behaviors compared with DTC. Gains were maintained at 3-month follow-up. After receiving treatment, the DTC group exhibited similar improvement. Teachers did not report improvement as a function of social skills treatment. The findings suggest that children with FASD benefit from CFT but that these social skills gains may not be observed in the classroom.

Child↗

Novel approaches to the diagnosis of fetal alcohol spectrum disorder.

The diagnosis of fetal alcohol spectrum disorder is a difficult task, especially in cases where clear, physical markers of in utero alcohol exposure are not apparent. Reviewed in the following paper are some older tools for screening alcohol use in pregnancy and present novel approaches to the diagnosis of FASD, including ethanol biomarker development to behavioural phenotyping. Improving current FASD diagnostic methodology through more novel approaches may provide the possibility of earlier and wider diagnosis, allowing intervention and treatment at stages where the advanced effects of alcohol can still be mitigated.

Alcohols↗

Comparison of the 4-digit diagnostic code and the Hoyme diagnostic guidelines for fetal alcohol spectrum disorders.

OBJECTIVE: The 4-Digit Diagnostic Code for fetal alcohol spectrum disorders and the Hoyme fetal alcohol spectrum disorders diagnostic guidelines differ markedly. The performances of the 2 diagnostic systems were compared. METHODS: The fetal alcohol syndrome diagnostic criteria from the 4-Digit Code and Hoyme guidelines were applied to 952 patients who had received an interdisciplinary, fetal alcohol spectrum disorders, diagnostic evaluation at the University of Washington with the 4-Digit Diagnostic Code and 16 children with confirmed absence of prenatal alcohol exposure. RESULTS: The prevalence of fetal alcohol syndrome was 3.7% with the 4-Digit Code and 4.1% with the Hoyme guidelines. Although the prevalences were similar, the patients identified were not. Only 17 individuals met the fetal alcohol syndrome criteria for both systems. An extraordinary number of patients (35%) met the Hoyme criteria for the fetal alcohol syndrome facial phenotype, but only 39 of those 330 patients met the Hoyme criteria for fetal alcohol syndrome. Even some children with no alcohol exposure (25%) had the Hoyme fetal alcohol syndrome face. The specificities of the Hoyme fetal alcohol syndrome face for the Hoyme fetal alcohol syndrome diagnosis and prenatal alcohol exposure were low in these populations. CONCLUSIONS: Without a specific facial phenotype, a valid diagnosis of fetal alcohol syndrome cannot be rendered for patients with prenatal alcohol exposure, because a causal link between their outcomes and exposure cannot be established, and a valid diagnosis of fetal alcohol syndrome cannot be rendered for patients with unknown alcohol exposure, because the face cannot serve as a valid proxy measure for alcohol exposure. Diagnostic guidelines must confirm the specificity of their fetal alcohol syndrome facial criteria to validate their diagnostic criteria.

Adolescent↗

National Institute on Alcohol Abuse and Alcoholism and the study of fetal alcohol spectrum disorders. The International Consortium.

Fetal alcohol syndrome (FAS) is a large and rapidly increasing public health problem worldwide. Aside the full-blown FAS, multiple terms are used to describe the continuum of effects that result from prenatal exposure to alcohol, including the whole fetal alcohol spectrum disorders (FASD). The revised Institute of Medicine (IOM) Diagnostic Classification System and the diagnostic criteria for FAS and FASD are reported, as well as the formation of the four-state FAS International Consortium and its aims, as the development of an information base that systematizes data collection that helps to determine at-high-risk populations, and to implement and test a scientific-based prevention/intervention model for at risk women. The Consortium was further enlarged, with the inclusion of some more states (including Italy), leading to the formation of the International Consortium for the Investigation of FASD. The objectives of the Consortium are reported, as well as its previous activities, the South Africa and Italy Projects (active case ascertainment initiatives), and its future activities.

Adult↗

Fetal alcohol spectrum disorder: Canadian guidelines for diagnosis.

The diagnosis of fetal alcohol spectrum disorder (FASD) is complex and guidelines are warranted. A subcommittee of the Public Health Agency of Canada's National Advisory Committee on Fetal Alcohol Spectrum Disorder reviewed, analysed and integrated current approaches to diagnosis to reach agreement on a standard in Canada. The purpose of this paper is to review and clarify the use of current diagnostic systems and make recommendations on their application for diagnosis of FASD-related disabilities in people of all ages. The guidelines are based on widespread consultation of expert practitioners and partners in the field. The guidelines have been organized into 7 categories: screening and referral; the physical examination and differential diagnosis; the neurobehavioural assessment; and treatment and follow-up; maternal alcohol history in pregnancy; diagnostic criteria for fetal alcohol syndrome (FAS), partial FAS and alcohol-related neurodevelopmental disorder; and harmonization of Institute of Medicine and 4-Digit Diagnostic Code approaches. The diagnosis requires a comprehensive history and physical and neurobehavioural assessments; a multidisciplinary approach is necessary. These are the first Canadian guidelines for the diagnosis of FAS and its related disabilities, developed by broad-based consultation among experts in diagnosis.

Abnormalities, Multiple↗

Sobering thoughts: town Hall meetings on fetal alcohol spectrum disorders.

Prenatal exposure to alcohol is one of the leading causes of preventable birth defects and developmental disabilities. During the past 30 years, fetal alcohol spectrum disorders (FASD), including fetal alcohol syndrome, have gradually begun to attract attention. However, awareness and understanding of the disorders remain low, and people who are affected are seriously underserved. The FASD Center for Excellence held a series of town hall meetings in 2002 and 2003 to gauge the issues surrounding FASD nationwide. On the basis of its findings, the center proposed a series of recommendations to begin to remedy some of the deficiencies that were identified.

Abnormalities, Drug-Induced↗

Identifying maternal self-reported alcohol use associated with fetal alcohol spectrum disorders.

BACKGROUND: The incidence of Fetal Alcohol Syndrome (FAS) has been estimated at 1 to 3 per 1,000 live births. Fetal Alcohol Spectrum Disorders (FASD) (which include FAS) are estimated to occur in about 1 in 100 births. Cessation of drinking during pregnancy can improve the outcome even if the unborn child is already affected. For individuals born with FASD, an early diagnosis appears to be a protective factor against secondary disabilities. A quick screening tool to identify newborn children at risk has been elusive. METHODS: A simple descriptive presentation is offered that shows where 36 individuals with FASD were found from among the many patterns and amounts of prenatal alcohol use that were reported by a sample of 1,439 pregnant women whose offspring were later examined within the first 7 years of life. RESULTS: Individuals with FASD (i.e., those with FAS, fetal alcohol effects, alcohol-related neurodevelopmental disorder ) were found within two aggregates of alcohol scores that together recommend a set of three to four alcohol questions. Within this derivation sample, one scoring of the questions yields almost 78% sensitivity and 97% specificity for FASD. Another scoring of the same instrument yields 100% sensitivity with 90% specificity. CONCLUSIONS: These new data may facilitate early identification of offspring who may be most in need of early intervention, namely those born with FASD.

Adolescent↗

Recognition and prevention of fetal alcohol syndrome.

Alcohol use among women of childbearing age is prevalent in the United States, with approximately 1 in 5 nonpregnant women reporting binge drinking (5 or more drinks on any one occasion) and 1 in 25 pregnant women reporting binge drinking. Alcohol use during pregnancy results in a spectrum of adverse outcomes known as fetal alcohol spectrum disorders. Fetal alcohol syndrome (FAS) is one of these disorders. Fetal alcohol syndrome is characterized by specific facial abnormalities and significant impairments in neurodevelopment and physical growth. Early identification of children with FAS has been shown to enhance their long-term outcomes. In an effort to improve clinical recognition of children with this condition, Centers for Disease Control and Prevention (CDC) was directed by Congress in 2002 to lead the development of uniform diagnostic criteria for FAS and other prenatal alcohol-related conditions. The purpose of this commentary is to provide clinicians a summary of the report released by CDC describing the current diagnostic criteria for FAS. In addition, advancements have been made in screening and brief interventions for alcohol use disorders in women who have the potential to make significant strides in the prevention of FAS spectrum disorders. Knowledge of the diagnostic criteria for FAS can lead to increased identification of the syndrome in infants and children and the provision of appropriate medical and support services. Screening for and intervening with women at risk for an alcohol-exposed pregnancy can prevent FAS and other fetal alcohol spectrum disorders.

Alcohol Drinking↗

Fetal alcohol spectrum disorders: an overview with emphasis on changes in brain and behavior.

Fetal alcohol spectrum disorders constitute a major public health problem. This article presents an overview of important issues that surround these disorders and emphasizes the structural and neurobehavioral consequences associated with prenatal exposure to alcohol. Diagnostic criteria are discussed, and possible moderating factors for the range of outcomes are mentioned. In addition, the prevalence of fetal alcohol spectrum disorders is described, and estimates of the financial impact of these disorders are given. Heavy prenatal alcohol exposure can severely affect the physical and neurobehavioral development of a child. Autopsy and brain imaging studies indicate reductions and abnormalities in overall brain size and shape, specifically in structures such as the cerebellum, basal ganglia, and corpus callosum. A wide range of neuropsychological deficits have been found in children prenatally exposed to alcohol, including deficits in visuospatial functioning, verbal and nonverbal learning, attention, and executive functioning. These children also exhibit a variety of behavioral problems that can further affect their daily functioning. Children exposed to alcohol prenatally, with and without the physical features of fetal alcohol syndrome, display qualitatively similar deficits. Determining the behavioral phenotypes that result from heavy prenatal alcohol exposure is critical, because the identification of these children is crucial for early interventions. In addition, knowing which brain areas are involved might enable the development of better intervention strategies. However, intervention needs to go beyond the affected individual to prevent future cases. As evidenced by the staggering financial impact these disorders have on society, prevention efforts need to be aimed at high-risk groups, and this issue needs to be made a high priority in terms of public health.

Alcohol Drinking↗

Neurobehavioral functioning in children with fetal alcohol spectrum disorder.

Neurobehavioral functioning of 50 Canadian children diagnosed with Fetal Alcohol Spectrum Disorder (FASD) was evaluated. The aims of this study were to identify specific areas of weakness in neurobehavioral functioning, to examine whether neurobehavioral functioning was related to various predictor variables, and to determine which measures differentiated between children given a brain score of 2 (possible dysfunction) and 3 (probable dysfunction). Participants displayed difficulties with many aspects of intelligence, memory, executive functioning, and attention. Measures of Full scale and Verbal IQ, as well as memory for faces and numbers differentiated between children with a brain 2 and 3 ranking. An interesting pattern of strengths and weaknesses emerged as well as significant differences related to ethnic background, gender, and age. Aboriginal children and Caucasian children with FASD do not appear to show the same pattern of strengths and weaknesses in neurobehavioral functioning.

Adolescent↗

Identifying the behavioural phenotype in Fetal Alcohol Spectrum Disorder: sensitivity, specificity and screening potential.

BACKGROUND: In most cases of Fetal Alcohol Spectrum Disorder (FASD), the pathognomonic facial features are absent making diagnosis challenging, if not impossible, particularly when no history of maternal drinking is available. Also because FASD is often comorbid with Attention Deficit Hyperactivity Disorder (ADHD), children with FASD are frequently improperly diagnosed and receive the wrong treatment. Since access to psychological testing is typically limited or non-existent in remote areas, other diagnostic methods are needed to provide necessary interventions. OBJECTIVES: To determine if a characteristic behavioural phenotype distinguishes children with FASD from typically developing children and children with ADHD and use this information to create a screening tool for FASD diagnosis. METHODS: Parents and caregivers completed the Child Behavior Checklist (CBCL), a well-established standardized tool for evaluating children's behavioural problems. Results from 30 children with Fetal Alcohol Syndrome or Alcohol-Related Neurodevelopmental Disability, 30 children with ADHD, and 30 typically developing healthy children matched for age and socioeconomic status with FASD were analyzed. Based on our previous work, 12 CBCL items that significantly differentiated FASD and control groups were selected for further analyses. Stepwise discriminant function analysis identified behavioural characteristics most strongly differentiating groups and Receiver Operating Characteristics (ROC) curve analyses determined sensitivity and specificity of different item combinations. RESULTS: Seven items reflecting hyperactivity, inattention, lying and cheating, lack of guilt, and disobedience significantly differentiated children with FASD from controls. ROC analyses showed scores of 6 or higher on these items differentiated groups with a sensitivity of 86%, specificity of 82%. For FASD and ADHD, two combinations of items significantly differentiated groups with high sensitivity and specificity (i) no guilt, cruelty, and acts young (sensitivity = 70%; specificity = 80% (ii) acts young, cruelty, no guilt, lying or cheating, steals from home, and steals outside (sensitivity = 81%; specificity = 72%). These items were used to construct a potential FASD screening tool. CONCLUSIONS: Our findings identifying the behavioural characteristics differentiating children with FASD from typically developing children or children with ADHD have the potential for development of an empirically derived tool for FASD tool to be used in remote areas where psychological services are not readily available. This technique may speed up diagnosis and intervention for children without ready access to formal assessments.

Attention Deficit Disorder with Hyperactivity↗

Persistence in high school: experiences of adolescents and young adults with Fetal Alcohol Spectrum Disorder.

BACKGROUND: This study examined persistence in high school among students with Fetal Alcohol Spectrum Disorder (FASD) from the perspective of the adolescents themselves. Tinto's (1975, 1997) Student Integration Model (SIM) provided the theoretical framework for the research. This model consists of three factors: background characteristics, academic integration, and social integration. METHOD: A collective case study method involving 8 adolescents with FASD from Canada and the United States was used. RESULTS: Although the students did not meet the usual academic standards and had acquaintances rather than friends, they perceived themselves as academically and socially successful. It was shown that persistence occurred largely because of the strong support of, and advocacy by, the adoptive parents. CONCLUSIONS: Parental advocacy is an environmental factor that may protect adolescents with FASD from dropping out of high school.

Adolescent↗

Genetic polymorphisms: impact on the risk of fetal alcohol spectrum disorders.

Clinical reports on monozygotic and dizygotic twins provided the initial evidence for the involvement of genetic factors in risk vulnerability for fetal alcohol spectrum disorders (FASD) including fetal alcohol syndrome (FAS). Research with selectively bred and inbred rodents, genetic crosses of these lines and strains, and embryo culture studies have further clarified the role of both maternal and fetal genetics in the development of FASD. Research to identify specific polymorphisms contributing to FASD is still at an early stage. To date, polymorphisms of only one of the genes for the alcohol dehydrogenase enzyme family, the ADH1B, have been demonstrated to contribute to FASD vulnerability. In comparison with ADH1B*1, both maternal and fetal ADH1B*2 have been shown to reduce risk for FAS in a mixed ancestry South African population. ADH1B*3 appears to afford protection for FASD outcomes in African-American populations. Other candidate genes should be examined with respect to FASD risk, including those for the enzymes of serotonin metabolism, in particular the serotonin transporter. By its very nature, alcohol teratogenesis is the expression of the interaction of genes with environment. The study of genetic factors in FASD falls within the new field of ecogenetics. Understanding of the array of genetic factors in FASD will be enhanced by future genetic investigations, including case-control, family association, and linkage studies.

Alcohol Dehydrogenase↗

Fetal alcohol spectrum disorders.

To complement the 2005 Annual Clinical Focus on medical genomics, AFP will be publishing a series of short reviews on genetic syndromes. This series was designed to increase awareness of these diseases so that family physicians can recognize and diagnose children with these disorders and understand the kind of care they might require in the future. The second review in this series discusses fetal alcohol syndrome and fetal alcohol spectrum disorders.

Adult↗