Fetal Alcohol Spectrum Disorder Literature

Fetal Alcohol Spectrum Disorder

Literature Review

Nancy Shipkey, MS, RN, doctoral student University at Buffalo, State University of New York, School of Nursing

Linda M. Caley PhD RN, Assistant Professor, University at Buffalo, State University of New YorkSchool of Nursing

Mary Ann Jezewski, PhD RN, Associate Director for Research, Associate Professor, University at Buffalo, State University of New York School of Nursing

Sally Speed, Unit Director

Medicaid Training Institute – HLTC03

Meg Brin, Administrative Director

CC02 Child Welfare/Child Protective Services Common Core Training for Caseworkers

Vivian Figliotti, Child Welfare/CPS Trainer

Jeannette Climenti, Child Welfare Trainer

Will Rea, Child Welfare Trainer

Maria Rivera, Child Welfare Trainer

Funding for this research project was provided by NYS Office of Children and Family Services, Contract year 2003: Project 1029345, Award: 27379; Project: 1029071, Award: 27229 Contract year 2004: Project 1037112, Award 31177; Project: 1037122, Award: 31183, Contract year: 2005: Project: 1044887, Award: 34963; Project: 1044698, Award: 34851 through the Center for Development of Human Services, College Relations Group, Research Foundation of SUNY, Buffalo State College.

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© 2005 CDHS/Research Foundation of SUNY/BSC College Relations Group

FETAL ALCOHOL SPECTRUM DISORDER LITERATURE

Fetal Alcohol Syndrome and Pregnancy

Citation /

Significance

Allard-Hendren, R. (2000). Alcohol use and pregnancy. MCN, American Journal of Maternal Child Nursing, 25(3), 159-162. / Reports indicate that 33/4% of adolescents engage in heavy episodic alcohol consumption, and that 34.8% of adolescents are sexually active by the age of 15 without using any form of contraception. Combined, these activities can lead to adolescent pregnancy complicated by fetal alcohol syndrome (FAS), a disorder that is totally preventable by abstinence from alcohol during pregnancy. This article offers some primary strategies in working with adolescents and communities to help prevent FAS.
Curet, L. B. & Hsi, A. C. (2002). Drug abuse during pregnancy.Clinical Obstetrics & Gynecology, 45 (1), 73-88. / Substance abuse remains a major health problem in the United States. The health consequences of substance abuse have been extensively researched and documented among men. However, the impact of substance abuse on the health of women and pregnancy has only recently received adequate attention. Nationwide, the use of alcohol and other drugs has increased dramatically in recent years. A major effect of this trend has been an increase in the awareness of the need to target special populations, especially women and more recently pregnant women and their children.
This article concludes that substance abuse programs for pregnant women should provide comprehensive care with as much “one-stop” shopping as possible. Goals should be to promote safe and healthy pregnancies, improve perinatal outcome, and enhance development of children exposed to alcohol, nicotine, and other drugs.
Golden, J. (2000). A tempest in a cocktail glass”: mothers, alcohol, and television. 1977-1996. Journal of Health Politics, Policy & Law, 25 (3), 473-498. / This article examines the portrayal of pregnancy and alcohol in thirty-six national network evening news broadcasts (ABC, CBS, NBC). Early coverage focused on white, middle-class women, as scientific authorities and government officials warned against drinking during pregnancy. After 1987, however, women who drank during pregnancy were depicted as members of minority groups and as a danger to society. The thematic transition began before warning labels appeared on alcoholic beverages and gained strength from official government efforts to prevent fetal alcohol syndrome. The greatest impetus for the revised discourse, however, was the eruption of a “moral panic” over crack cocaine use. By linking fetal harm to substance abuse, the panic suggested it was in the public’s interest to control the behavior of pregnant women.
Hawke, M. (2202). FAS: an ounce of prevention. Nursing Spectrum (Greater Philadelphia/Tri-State Edition), 11(24), 10-11. / In the case of fetal alcohol syndrome (FAS), prevention is the cure. “FAS is 100% preventable if the mother doesn’t drink alcohol during pregnancy. While we know the cause and effects, what we don’t know is the minimum amounts of alcohol required to produce FAS and other alcohol-related disorders. FAS is often misdiagnosed and the treatment is delayed because the diagnosis so greatly depends on the disclosure of the mother’s alcohol use during pregnancy. The importance of early diagnosis is discussed.
Hicks, M., Sauve, R., Lyon, A., Clarke, M., & Tough, S. (2003). Alcohol use and abuse in pregnancy: an evaluation of the merits of screening. The Canadian Child and Adolescent Psychiatry Review, 12(3), 77-80. / This article briefly reviews the evidence for screening for alcohol use and abuse in the perinatal period using the WHO criteria. There is some evidence of the benefits of such a program but limited evidence of the effectiveness of screening tools, interventions, and the current capacity of the health care and mental health systems to deal with individuals identified at risk. This review highlights the importance of using standardized screening methods for alcohol use and abuse during pregnancy and with women of childbearing age.

Fetal Alcohol Syndrome Diagnosis, Management and Prevention

Citation / Significance
Applebaum, N. G. (1995). Fetal alcohol syndrome: diagnosis, management and prevention. Nurse Practitioner, 20 (10), 24-33. / Fetal alcohol syndrome (FAS) and fetal alcohol effects (FAE) encompass a pattern of birth defects in persons whose mother ingested alcohol during pregnancy. Persons with FAE display fewer of the FAS traits. The hallmarks of FAS are pre- and postnatal growth retardation, central nervous system dysfunction, and characteristic facial dysmorphology. However, its effects can be multi-systemic -- encompassing the cardiac, skeletal, and muscular systems, as well as presenting as lack of coordination, hyperactivity, diminished or distorted sense of danger, and lack of ability to function as an independent adult. The frequent incidence of this constellation of symptoms has a far-reaching impact (familial, medical, educational, and societal) because a myriad of professionals and large amounts of funding are used to help manage FAS/FAE children and adults. This article identifies, for a primary care provider, the essential characteristics of FAS/FAE and discusses available management options. Early diagnosis and continued education are advantageous at all levels, benefiting the individual and all of society.
Astley, S. J. & Clarren, K. (2000). Diagnosing the full spectrum of fetal alcohol exposed individuals introducing the 4-digit diagnostic code. Alcohol and Alcoholism, 35(4), 400-410. / The medical/research records of 1,014 patients diagnosed at the Washington State FAS Diagnostic and Prevention Network of clinics were used to develop a new, comprehensive reproducible method for diagnosing the full spectrum of outcomes among patients with prenatal alcohol exposure. This new diagnostic method, called the 4-Digit Diagnostic Code, was compared to the standard method of diagnosis. The 4-Digit Diagnostic Code more accurately and comprehensively documented the outcomes of the patients. The four digits in the code reflect the magnitude of expression of the four key diagnostic features of FAS in the following order: (1) growth deficiency, (2) the FAS facial phenotype, (3) central nervous system damage/dysfunction, and (4) gestational alcohol exposure. The 4-Digit Diagnostic Code is being used effectively for diagnosis, screening, and surveillance efforts n all Washington State FAS DPN clinics
Astley, S. J. Stachowiak, et al. (2002). Application of the Fetal alcohol syndrome facial screening tool in a foster care population. Journal of Pediatrics, 141(5), 712-717. / The researchers determined the prevalence of fetal alcohol syndrome (FAS) in a foster care population and evaluated the performance of the FAS Facial Photographic Screening Tool. All children enrolled in a Washington State Foster Care Program were screened for three conditions.
The prevalence of FAS in this foster care population was 10 to 15/1000, or 10 to 15 times greater than in the general population. They conclude that the foster car population is a high-risk population for FAS. The screening tool performed with very high accuracy and could be used to track FAS prevalence over time in foster care to accurately assess the effectiveness of primary prevention efforts.

Effects of Fetal Alcohol Syndrome

Citation / Significance
Adams, J., Bittner, P., Buttar, H., Chambers, C., Collins, T. Daston, G., et al. (2002). Statement of the Public Affairs Committee of the Teratology Society on the fetal alcohol syndrome. Teratology, 66(6), 344-347. / This statement acknowledges that although there are numerous gaps in knowledge when considering the full spectrum of effects of prenatal exposure to alcohol, several unresolved problems relating to the diagnosis and prevention of the most severe end of the spectrum, fetal alcohol syndrome are of particular importance. The following five points are of particular importance. (1) Improved recognition of FAS, (2) Identifying neurobehavioral effects associated with prenatal exposure to alcohol, (3) Determining risks of heavy alcohol consumption during early pregnancy, (4) Risk factors for and prevention of FAS, (5) Social and economic factors associated with prevalence and prevention of FAS.
AmericanAcademy of Pediatrics (2000). Fetal alcohol syndrome and alcohol-related neurodevelopmental disorders. Pediatrics, 106 (2 part 1), 358-361. / Prenatal exposure to alcohol is one of the leading preventable causes of birth defects, mental retardation, and neurodevelopmental disorders. In 1973, a cluster of birth defects resulting from prenatal alcohol exposure was recognized as a clinical entity called fetal alcohol syndrome. More recently, alcohol exposure in utero has been linked to a variety of other neurodevelopmental problems, and the terms alcohol-related neurodevelopmental disorder and alcohol-related birth defects have been proposed to identify infants so affected. This statement is an update of a previous statement by the AmericanAcademy of Pediatrics and reflects the current thinking about alcohol exposure in utero and the revised effects.
Chambers, C., & Jones, K. (2002). Is genotype important in predicting the fetal alcohol syndrome? Journal of Pediatrics, 141 (6), 751-753. /

A number of factors have been identified during the last few years that appear to be important predictors of whether a woman who drinks alcohol during pregnancy will have a baby with the fetal alcohol syndrome. None of these appear to be more complex, more difficult to understand, and potentially more important, than the alcohol metabolizing genes. African American race/ethnicity was previously suggested to be a risk factor for FAS, because of a certain gene. Non African American women with the same gene were found to have significantly higher chance of having infants with growth retardation and/or facial features of FAS.

Clark, C., Li, D., Conry, J., Conry, R., & Loock, C. (2000). Structural and functional brain integrity of fetal alcohol syndrome in non-retarded case.Pediatrics, 105 (5), 1096-1099. / The purpose of this research study was to determine the structural and functional integrity of the brain in a sample of non-retarded individuals with fetal alcohol syndrome. The results of this study when coupled with previous findings suggest a continuum of neuropathology in fetal alcohol syndrome. For cases with relatively mild intellectual deficits, the cause of the deficit is at a micro-level rather than a macro-level. For these individuals, the effects of maternal alcohol consumption, behaviorally and neuropathologically, may be subtler but still disabling.
Kenner, C., & D’Apolito, K. (1997). Outcomes for children exposed to drugs in utero. JOGNN -Journal of Obstetric, Gynecologic, & Neonatal Nursing, 26 (5), 595-603. / Substance abuse among pregnant women remains a national health issue. The incidence of infants born addicted to licit and illicit substances is increasing. The long-term outcomes have not been consistently documented. These appear to include mild to severe developmental and cognitive problems, depending upon the substance used. Central nervous system problems, behavioral dysfunction, and safety issues are major parental concerns for these children as they grow. Interventions must be aimed at thorough assessments, including an accurate maternal history, use of supports for positive neurodevelopment, parent education about infant/child cues, and encouragement of educational environments that are highly structured and safe. Consistent, long-term follow-up is essential to optimize long-term outcomes

Prevalence of Fetal Alcohol Syndrome

Citation / Significance
Centers for Disease Control. (2002). Fetal alcohol syndrome – Alaska, Arizona, Colorado, and New York, 1995-1997. MMWR – Morbidity & Mortality Weekly Report, 51 (20). 433-435. / This report demonstrates that maternal alcohol use during pregnancy continues to affect children. Recent data indicate that the prevalence of binge (i.e., >5 drinks on any one occasion) and frequent drinking (i.e., > 7 drinks per week or >5 drinks on any one occasion) during pregnancy reached a high point in 1995 and has not declined. Ongoing, consistent, population-based surveillance systems are necessary to measure the occurrence of FAS and the impact of FAS prevention activities. One of the national health objectives for 2010 is to reduce the occurrence of FAS; however, no national surveillance program exists to evaluate progress in achieving this objective.
May, P., & Gossage, J. (2001). Estimating the prevalence of fetal alcohol syndrome: A summary . Alcohol Health & Research World, 25 (3), 159-167. / Discusses methods of estimating the prevalence of fetal alcohol syndrome (FAS). Three main types of research methods used to study FAS are passive surveillance, clinic-based studies, and active case ascertainment. Researchers using passive systems use existing records, including birth certificates, special registries for children with developmental disabilities or birth defects, and medical charts of hospitals and physicians. Clinic-based studies are generally conducted in prenatal clinics of large hospitals where researchers can collect data from mothers during their pregnancies. Active case ascertainment studies are unique in that they actively seek, find, and recruit children who may have FAS within the population under study. The maternal risk factors associated with FAS and other alcohol-related anomalies include advanced maternal age, low SES, frequent binge drinking, family and friends with drinking problems, and poor social and psychological indicators. Literature indicates a FAS prevalence rate of 0.5-2 cases per 1,000 births in the US during the 1980s and 1990s.

Fetal Alcohol Syndrome and Families

Citation / Significance
Hess, D., & Kenner, C. (1998). Families caring for children with fetal alcohol syndrome: the nurse’s role in early identification and intervention. Holistic Nursing Practice, 12 (3), 47-54. / Alcohol is a teratogenic substance that, when ingested during pregnancy, may cause the fetus to be born with a condition known as fetal alcohol syndrome (FAS). FAS is a life-long condition that leads to serious primary and secondary disabilities. Holistic early identification and intervention for children with FAS and their families may ameliorate the secondary disabilities associated with FAS. Nurses working with families and young children could play a key role in early identification and intervention for children with FAS.

Fetal Alcohol Syndrome and Native Americans

Citation / Significance
Indian and Inuit Health Committee & Society. (2002). Fetal alcohol syndrome. Paediatrics & Child Health, 7(3), 161-174. / Although FAS is found in all socioeconomic groups in Canada, it has been observed at high prevalence in select First nations and Inuit communities in Canada. Although all races are susceptible, FAS is disproportionately higher among American Indian offspring. This statement addresses FAS prevention, diagnosis, early identification and management. Interventions focus on optimizing development, managing behavioral difficulties and providing appropriate school programming. Of prime importance is earliest possible childhood intervention to prevent secondary disabilities that may result from delay while awaiting a definitive diagnosis of FAS.
Robinson, G., Armstrong, R. Moczuk, I. & Loock. (1992). Knowlede of fetal alcohol syndrome among native Indians. Canadian Journal of Public Health, 83 (5), 337-338. / This report on a survey of native Indians revealed limited teaching about alcohol. Nevertheless, virtually all were aware of the danger of maternal drinking during pregnancy. The majority said they had heard of FAS but major gaps existed in knowledge about causation, characteristics and implications of FAS.

Fetal Alcohol Syndrome Surveys

Citation / Significance
Diekman, S. Floyd, R., Decoufle, P. Schulkin, J., Ebrahim, S., & Sokol, R. (2000). A survey of obstetricians-gynecologists on their patient’s alcohol use during pregnancy. Obstetrics & Gynecology, 95(5), 756-763. / This survey was conducted to examine knowledge, attitudes, current clinical practices, and educational needs of obstetrician-gynecologists regarding patients' alcohol use during pregnancy. METHODS: A 20-item, self-administered questionnaire on patients' prenatal alcohol use was sent to 1000 active ACOG fellows. Responses were analyzed using univariate and multivariate statistical techniques. RESULTS: Of the 60% of the obstetrician-gynecologists who responded to the survey, 97% reported asking their pregnant patients about alcohol use. When a patient reports alcohol use, most respondents reported that they always discuss adverse effects and always advise abstinence. One fifth of the respondents (20%) reported abstinence to be the safest way to avoid all four of the adverse pregnancy outcomes cited (i.e., spontaneous abortion, central nervous system impairment, birth defects, and fetal alcohol syndrome); 13% were unsure about levels associated with all of the adverse outcomes; and 4% reported that consumption of eight or more drinks per week did not pose a risk for any of the four adverse outcomes. The two resources that respondents said they needed most to improve alcohol-use assessment were information on thresholds for adverse reproductive outcomes (83%) and referral resources for patients with alcohol problems (63%). CONCLUSION: Efforts should be made to provide practicing obstetrician-gynecologists with updates on the adverse effects of alcohol use by pregnant women and with effective methods for screening and counseling women who report alcohol use during pregnancy.
Tough, S., Clarke, M & Hicks, M. (2003). Knowledge and attitudes of Canadian Psychiatrists regarding fetal alcohol spectrum disorder. The Canadian Child and Adolescent Psychiatry Review, 12 (3), 64-71. / This study represents the first survey of psychiatrists in the area of knowledge, attitudes and practices related to FASD in Canada. The results revealed that there is a great need to help psychiatrists recognize the primary and secondary disabilities of FASD especially in affected individuals who do not have mental retardation or dysmorphic features as part of their diagnosis. There will be a great need in the future for psychiatrists to work closely with colleagues in the fields of addictions, pediatrics and neuropsychology to develop a comprehensive multidisciplinary approach to this significant and ultimately preventable condition.

Historical Perspective of Fetal Alcohol Syndrome