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1. A North Dakota Prevalence Study of Fetal Alcohol Syndrome
   
2. Children With Fetal Alcohol Syndrome in North Dakota: A Case Control Study Utilizing Birth Certificate Data
3. Fetal Alcohol Syndrome: Syndrome Delineation and Management
   
4. Fetal Alcohol Syndrome: The North Dakota Experience
5. Widespread Community-Based Screening For Fetal Alcohol Syndrome: Is It Feasible And Necessary?
   
6. The FAS Screen: A Rapid Screening Tool for Fetal Alcohol Syndrome
7. Surveillance Of Fetal Alcohol Syndrome In North Dakota
   
8. Fetal Alcohol Syndrome: Maternal and neonatal characteristics
   
9. The Epidemiology Of Fetal Alcohol Syndrome In American Indians, Alaskan Natives, And Canadian Aboriginal Peoples: A Review Of The Literature
10. Fetal Alcohol Syndrome: Syndrome Delineation and Management
    
11. Prevention of Fetal Alcohol Syndrome

1. A North Dakota Prevalence Study of Fetal Alcohol Syndrome

Abstract

We conducted a prevalence study of Fetal Alcohol Syndrome (FAS) in the State of North Dakota. The response rate was 100%. Sixty-one children were reported to have a diagnosis of FAS. This suggests a prevalence rate of FAS in North Dakota children of 3.1 per 10,000 with a male-female ratio of 2:1. The rate among the Indian population was 1 per 276 or 36.2 per 10,000.

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2. Children With Fetal Alcohol Syndrome in North Dakota: A Case Control Study Utilizing Birth Certificate Data

Abstract

A retrospective case-control study utilizing birth certificate data in a population of children with Fetal Alcohol Syndrome (FAS) or Fetal Alcohol Effect (FAE) and controls in North Dakota was completed.

Using the North Dakota FAS registry, 97 cases of FAS and FAE aged birth-18 years of age were identified. The North Dakota Department of Vital Records then searched for the child's birth certificates. For each case child, four controls were selected from the birth records. The controls were of the same race, sex, month and county of birth as the cases.

Birth certificates for 68 children were identified, 44 with FAS and 24 with FAE. When compared with the FAE group, the FAS group had lower birth weights and mothers who began prenatal care later in pregnancy. The FAS/FAE group combined had mothers who were older, were more likely to be unmarried, had less weight gain during pregnancy, started prenatal care later in pregnancy and had fewer prenatal visits compared to controls. The FAS/FAE children had lower birth weights and higher rates of sibling deaths.

The use of birth certificate data is a useful data source to compare maternal, paternal and prenatal characteristics for a population of children with FAS/FAE.

Burd, L., Martsolf, JT, & Klug, M. Children with Fetal Alcohol Syndrome in North Dakota: A case control study utilizing birth certificate data. Addiction Biology 1996, I, 181-189.

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3. Fetal Alcohol Syndrome: Syndrome Delineation and Management

Abstract

Fetal Alcohol Syndrome (FAS) is a common neuropsychiatric developmental disorder with wide ranging implications for development in multiple areas. The presence of complex cognitive, behavioral and physical symptomatology in patients with FAS will require increasing contact with psychiatrists who treat children, adolescents and adults. Psychiatry will play an important role in the evaluation and development of comprehensive treatment plans for persons with FAS.

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4. Fetal Alcohol Syndrome: The North Dakota Experience

Abstract

Fetal Alcohol Syndrome (FAS) is the leading identifiable cause of mental retardation in the United States. Prevalence rates in the US for FAS range from 1.0 to 1,900 per 10,000 live births. North Dakota has 12-18 infants born each year with FAS. The lifetime of care required by these people is expensive. Service delivery systems need additional coordination in order to appropriately serve this population. Suggestions for needed changes are discussed.

Burd, L., Wentz, T. Fetal Alcohol Syndrome: The North Dakota Experience. North Dakota Human Services Quarterly 1997, 1, 14-20.

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5. Widespread Community-Based Screening For Fetal Alcohol Syndrome: Is It Feasible And Necessary?

Abstract

The relevant issues involved in community-based screening for fetal alcohol syndrome (FAS) are presented. The disorder is expensive and people with FAS have poor outcomes as adults with less than 10% living independently. Currently two screening tools for FAS are available. These could form the basis of prevention programs to reduce new cases of FAS and secondary disabilities in people with FAS. Screening for FAS in children of school age would be a useful target population. Community-based screening of this group and high risk populations should be considered as an option to increase the completeness of ascertainment and to develop prevalence estimates. Screening could also be an important strategy to improve services for affected persons. Determination of efficacy, efficiency and effectiveness studies of FAS screening programs would be important before implementing widespread screening.

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6. The FAS Screen: A Rapid Screening Tool for Fetal Alcohol Syndrome

Abstract

Fetal alcohol syndrome (FAS) is an important cause of mental retardation and developmental disabilities. A population based screening tool would allow for early diagnosis and entry into intervention programs.

Objective

To develop a brief screening tool for use in population based settings to improve the identification of children with FAS.

Method

The FAS Screen was developed and tested in six sites. These were sites that served children and all were located in North Dakota.

Results

Screening was completed on 1013 children, 65 were found to have a positive screening score and were referred. Forty were seen for evaluation by a medical geneticist and six were diagnosed with FAS. The estimated values for the screening tool were: specificity 94.1%, sensitivity 100%, positive predictive value 9.1% and negative predictive value 100%. The cost of screening was $13.00 per child and the cost per case identified was $4,100.

Conclusion

The FAS Screen is a brief screening test with acceptable performance characteristics and is cost effective.

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7. Surveillance Of Fetal Alcohol Syndrome In North Dakota

Abstract

Surveillance programs are essential components in most public health prevention systems. A major function of surveillance systems is to determine changes in prevalence rates of a condition over time. This same data is also important for states to utilize in development of programs for diagnosis, treatment, primary prevention and the prevention of secondary disabilities in persons with the condition of interest. This project describes the development and results of a 15-year long surveillance system for Fetal Alcohol Syndrome in the State of North Dakota.

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8. Fetal Alcohol Syndrome: Maternal and neonatal characteristics

Abstract

Alcohol is the most common identifiable teratogenic cause of mental retardation in North America. Fetal Alcohol Syndrome (FAS) is a major public health problem, which is frequently under diagnosed by physicians.

Objective

To identify and quantify the maternal risk factors and neonatal characteristics of children with FAS.

Design

A retrospective case-control study using birth certificate data of North Dakota children diagnosed with FAS. Five controls were selected for each patient. Controls were selected from the computerized birth registry and matched by gender, year and month of birth.

Subjects and setting

A list of all the children diagnosed with FAS from the North Dakota FAS Registry was sent to the State Health Department. We were able to locate the birth certificates for 132 (56%) of the 228 cases on the registry.

Results

Of the 132 FAS cases, 106 (80.3%) were Native Americans and 24 (18.2%) were Caucasians. In this sample 51(38.6%) of the cases were male and 81 (61.4%) were female. Statistically significant maternal characteristics at p<0.01 were: older mother's age, lower education level, fewer months of prenatal care, fewer prenatal visits, lower gestational age at time of delivery and less prenatal weight gain. Significant neonatal differences at p<0.01 were lower birth weight and Apgar scores and higher incidence of congenital malformations.

Conclusion

FAS is a completely preventable developmental disability. Consumption of alcohol during pregnancy can result in lifelong physical and mental impairments on the fetus. All pregnant women should be screened for alcohol use during prenatal visits. Women with positive screens or at high risk should be identified early by the primary care physician and referred for treatment and counseling.

Bagheri, M., Burd, L., Martsolf, J. and Klug, M. Fetal Alcohol Syndrome: Maternal and neonatal characteristics. Journal of Perinatal Medicine 1998, 26 263-269

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9. The Epidemiology Of Fetal Alcohol Syndrome In American Indians, Alaskan Natives, And Canadian Aboriginal Peoples: A Review Of The Literature

Abstract

A critical review of available reports on the epidemiology of Fetal Alcohol Syndrome in Indian, Eskimo and Native peoples was completed. A search of Medline, the National Institute Alcoholism and Alcohol Abuse Database and other relevant databases was conducted. The reference lists of several publications on Fetal Alcohol Syndrome were reviewed and four prominent researchers and four government agencies were contacted to identify unpublished articles.

This identified ten studies eight of which were cross-sectional. Four of these studies utilized primary data from the authors evaluation of children suspected of having Fetal Alcohol Syndrome, the other six studies utilized secondary data. The prevalence of Fetal Alcohol Syndrome in the Indian and Native population of the United States and Canada was consistently high across the ten studies. These studies have significant limitations which limit both the confidence in the rates reported and the generalizability of the results. Three studies utilized data from the province of British Columbia. No study evaluated all children in the study area. Only two studies reviewed death certificates. Blinding of examiners to maternal alcohol use was included in only one study and no study presented evidence on the sensitivity and specificity of either the screening efforts or diagnostic criteria. This is especially important in studies of secondary data and in studies which report rates from newborn populations.

Studies of the sensitivity and specificity of the diagnostic criteria for Fetal Alcohol Syndrome are required. Other study designs including longitudinal cohort studies are needed. Additional studies of populations of Indian and Natives where low rates of Fetal Alcohol Syndrome are suspected should be completed. Reviews of death certificates would also be a potentially important source of cases.

Burd, L. & Moffatt, M.E. Epidemiology of Fetal Alcohol Syndrome in American Indians, Alaskan Natives, and Canadian Aboriginal Peoples: A Review of the Literature. Public Health Reports 1994, 109, 688-93.

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10. Fetal Alcohol Syndrome: Syndrome Delineation and Management

Abstract

Fetal Alcohol Syndrome (FAS) is a common neuropsychiatric developmental disorder with wide ranging implications for development in multiple areas. The presence of complex cognitive, behavioral and physical symptomatology in patients with FAS will require increasing contact with psychiatrists who treat children, adolescents and adults. Psychiatry will play an important role in the evaluation and development of comprehensive treatment plans for persons with FAS.

Burd, L., Martsolf, J.T., Kerbeshian, J. Mohr, T., Mohr, P. and Ebertowski, M. Fetal Alcohol Syndrome: Delineation and Management. Clinical Advances in the Treatment of Psychiatric Disorders, 1996, 10, 1-8.

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11. Prevention of Fetal Alcohol Syndrome

Abstract

Summary

A Proposal to Develop a Surveillance System for North Dakota Residents Who Enter Alcohol Treatment Programs

Objectives

At the end of the contract period this study will:

1. Demonstrate the potential for population-based surveillance of North Dakota residents entering substance abuse treatment programs in North Dakota;
2. compare mortality rates of children born males and females entering alcohol treatment programs in North Dakota.

Method

Two treatment centers have agreed to participate in the project. The average number of admissions is 900 for the North Dakota State Hospital and 500 for the Heartview Foundation. About 200 of these admissions are Indian people. The attached questionnaire will be completed on each persons entering the programs for a 10 month. The validity and accuracy of the questionnaire information will be determined by re-interviewing 2% of the clients.

Final Product

A written report discussing the feasibility and potential for expansion expanding this project to all 17 treatment centers in North Dakota and anticipated costs will be provided. The initial data will examine infant and childhood mortality. If the system is feasible future adaptations of the questionnaire could examine morbidity, mild mental retardation, out-of-home placement, cerebral palsy, and a variety of other variables. The potential for additional studies to compare women entering alcohol treatment programs and women selected from the larger North Dakota population will be discussed.

Kerbeshian, J., & Burd, L. Asperger's Syndrome and Tourette Syndrome: The Case of the Pinball Wizard. British Journal of Psychiatry 1986, 148, 731-736.

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