Fetal Alcohol Syndrome Diagnosis, Epidemiology, Prevention, and Treatment (1996) / Chapter Skim
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5 Epidemiology and Surveillance of Fetal Alcohol Syndrome
5 Epidemiology and Surveillance of Fetal Alcohol Syndrome
Pages 82-99
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From page 82... ...
Epidemiology and surveillance of fetal alcohol syndrome (FAS) , alcohol-related birth defects (ARBD)
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From page 83... ...
The incidence of FAS has been estimated from data of three main types: information collected passively for another or for many purposes, such as birth defects registries; information gathered either retrospectively or prospectively from hospital or clinic-based populations, including subjects in controlled epidemiologic studies of the effects of maternal substance abuse (which frequently measure the incidence or prevalence of traits or characteristics associated with FAS, not the incidence of FAS itself) ; and population-based active case ascertainment.
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From page 84... ...
In general, the surveillance of FAS is similar in these other systems. Information on birth defects incidence and prevalence at the national level is inadequate and FAS is no exception.
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From page 86... ...
Prospective Epidemiologic Studies of the Elects of Maternal Substance Abuse While the clinic-based studies described above focus primarily on the incidence of formally diagnosed cases of FAS, ARBD, or ARND, the approach that some other researchers have taken is to record maternal drinking and drug-taking patterns in large samples from clinic and hospital settings. The children of these women are then followed over time to document birth weight, length, head circumference, structural malformations, and other relevant traits.
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From page 87... ...
The relation between the incidence of FAS and the incidence of these traits associated with prenatal alcohol exposure is not fully understood. Population-Based Epidemiology Studies Population-based epidemiologic studies using active case ascertainment can assist in addressing some of the criticisms mentioned above, can provide relevant information on the magnitude of the problem in specific communities, and may be more useful for comprehensive community-based prevention efforts.
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From page 88... ...
In the Native American tribes highlighted in the FAS prevalence studies, the drinking pattern is bimodal: a high proportion of the tribe does not drink at all, but among those who do drink there is a high proportion of heavy and abusive drinkers (May, 1994~. Many of those young and middle-aged adults who drink do so in large quantities and generally participate in subcultures emphasizing long binges of heavy drinking leading to very high blood alcohol levels over several days.
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From page 89... ...
Role of Epidemiology in Prevention Programs The major public health planning document of this decade, Healthy People 2000, states that the baseline incidence rate for FAS for the United States is 0.22 per 1,000 births (U.S. Department of Health and Human Services, l991b)
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From page 90... ...
Each of these issues is relevant for both FAS epidemiology studies and comprehensive prevention programs. Use of Multiple Data Sources Several recent projects of surveillance and prevalence assessment have utilized multiple data sources and approaches.
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From page 91... ...
Passive Surveillance Passive surveillance is the strategy generally used to monitor birth defects (Lynberg and Edmonds, 1992~. This strategy simply tallies the number of cases of a defined birth defect or syndrome noted on existing documents, such as medical records, and relates that figure to some population.
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From page 92... ...
Even in the presence of these improvements, however, correct ascertainment of the rate of FAS at birth remains problematic due to the difficulty in assessing CNS or neurobehavioral abnormalities at this age. Indirect Indicators An alternative to monitoring the incidence of FAS at birth is to develop surveillance criteria that would identify a group of newborns with a high probability of having FAS, for example, newborns with birth weights below 2 standard deviations for gestational age.
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From page 93... ...
Surveillance criteria for proxy indicators of FAS were defined as either head circumference, weight or height at birth less than the 10th percentile, and the presence of at least one facial anomaly. The facial anomalies were selected from the list of facial dysmorphic features that are part of FAS.
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From page 94... ...
To establish a relationship between the incidence of cases with the surveillance criteria and the occurrence of FAS, however, would require replicated investigations using dysmorphologists trained in the identification of FAS and follow-up of these research cohorts over the first few years to determine the predictability of the surveillance criteria to the diagnosis. The advantages of a surveillance program using indirect measures or indicators lie primarily in three areas: (1)
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From page 95... ...
The Atlanta study included many women who drank heavily, and many dysmorphic children were identified. Proxy Measures in an Active Surveillance Program Just as passive surveillance can be refined by using or including indirect measures that focus on birth weight or some other indicator for case finding, so too can active surveillance for FAS include proxy measures.
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From page 96... ...
Population-based epidemiologic studies can be very useful as part of an active surveillance effort. Given the inadequacy of passive surveillance for estimating the magnitude nationally of the FAS problem, for indicating success or failure of prevention efforts, and for identifying FAS children and families in need of clinical, social, and educational services, other approaches need to considered, expanded, and validated.
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From page 97... ...
Thus, the results of heavy prenatal alcohol exposure constitute a major public health concern. The committee endorses the efforts of the Centers for Disease Control and Prevention to move away from passive surveillance methods, which have been unsuccessful in defining the magnitude of this problem, but recognizes that no national baseline is available to judge the impact of public health and other preventive interventions.
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From page 98... ...
Linking multiple data sources in fetal alcohol syndrome surveillanceAlaska. Morbidity and Mortality Weekly Report 1993b; 42:312-314.
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From page 99... ...
A pilot project on fetal alcohol syndrome among American Indians. Alcohol Health & Research World 1983; 7:3-9.
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