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Birth Certificates as a Source for Fetal Alcohol Syndrome Case Ascertainment -- Georgia, 1989-1992

Fetal alcohol syndrome (FAS) is a major cause of preventable mental retardation (1). The development and evaluation of programs for preventing FAS may be enhanced by timely and reliable estimates of the occurrence of this complex birth defect. In 1989, birth certificates were standardized nationally to include check-boxes for reporting FAS and other congenital abnormalities (2). These changes were implemented to improve the potential usefulness of birth certificates for timely and systematic population-based ascertainment of FAS and other abnormal conditions of the newborn (3). To assess the usefulness of birth certificates for surveillance of FAS, the Division of Public Health, Georgia Department of Human Resources (DPH-GDHR), compared information about congenital anomalies from birth certificates to data collected by CDC's Metropolitan Atlanta Congenital Defects Program (MACDP) during 1989-1992. This report summarizes the results of the assessment of FAS.

MACDP is a population-based birth defects registry that identifies children with birth defects diagnosed during the neonatal and infant periods (4). MACDP uses multiple sources (including birth certificates) for identifying birth defect cases and reviews medical and laboratory records of identified cases for verifying case status. Since 1968, MACDP has collected data on approximately 26,000 infants with major congenital anomalies from among nearly 775,000 live-born infants in the five-county area of metropolitan Atlanta. For this study, MACDP was considered the standard for FAS case identification because of its multiple-source case ascertainment, including maternal and infant medical record review within the hospital of birth during the newborn period. Birth certificates were compared with the MACDP registry for sensitivity and predictive value positive (PVP). Potential cases identified by birth certificates were considered true positives if they were registered as FAS in the MACDP registry; potential cases were considered false positives if FAS was noted on the birth certificates but not in the MACDP. Each false-positive case then underwent medical record review to determine whether it had been missed by MACDP.

To determine whether personnel completing birth certificates could have used medical record review to determine an infant's FAS status, the date of diagnosis reported in the MACDP file was compared with the date of birth. If the diagnosis was recorded within 2 days of birth, it was assumed that this information was available to the person completing the birth certificate for inclusion on the birth certificate. For infants included in MACDP with FAS, 86% had FAS diagnosed on the date of birth and 94% within 2 days of birth.

From 1989 through 1992, MACDP identified 35 FAS cases (overall rate: 2.3 per 10,000 births). FAS was noted on the birth certificates of 14 infants. Four of the 14 were true positives, and the other 10 were false positives. The sensitivity of the birth certificates was 11% (four of 35); the PVP was 29% (four of 14). False positives accounted for 71% of cases reported through birth certificates. Birth certificates recorded any maternal alcohol consumption during pregnancy for only five of the 10 false positives, while medical record review of the false positives indicated a specific maternal history of alcohol consumption for only three. Reported by: MP Mathis, PhD, Office of Perinatal Epidemiology, Epidemiology and Prevention Br; M Lavoie, MA, Center for Health Information; C Hadley, MN, Family Health Br; K Toomey, MD, State Epidemiologist, Div of Public Health, Georgia Dept of Human Resources. Birth Defects and Genetic Diseases Br, and Fetal Alcohol Syndrome Prevention Section, Developmental Disabilities Br, Div of Birth Defects and Developmental Disabilities, National Center for Environmental Health, CDC.

Editorial Note

Editorial Note: The findings in this report indicate that birth certificates alone are a poor source for FAS case surveillance. In Georgia, birth certificates underreported FAS cases as well as incorrectly identified FAS cases. These findings underscore the need for improving the quality of diagnostic information for FAS on birth certificates. For 86% of MACDP-enrolled FAS cases, the information used to verify FAS status was recorded on the day of birth, suggesting that correct information about FAS status could be obtained and recorded on birth certificates if personnel completing the vital record routinely reviewed diagnoses contained in birth charts.

The high rate (71%) of false positives reported on birth certificates in this report represents an over-reporting of FAS without indication of physical findings from medical records to substantiate the report. Maternal history of alcohol consumption during pregnancy may be considered sufficient evidence by some health professionals for a diagnosis of FAS on the birth certificate. However, FAS is a complex birth syndrome with specific physical and developmental findings; maternal alcohol consumption during pregnancy is essential but not sufficient for a diagnosis of FAS.

In the United States, birth defects are the leading cause of infant mortality (5), emphasizing the necessity of accurate information on birth defects for public health assessment. To improve the usefulness of birth certificates for birth defects surveillance and other public health needs, however, the quality of birth certificate data will need to be improved.

The data for more accurate diagnosis and reporting of FAS and other abnormal conditions of the newborn often are available from the medical record, and consultation of these records before completion of the birth certificate may improve the quality and utility of birth certificate data. Pediatricians should be enlisted to provide information about the conditions of the newborn while obstetricians continue to provide information about conditions of the mother (6). In addition, birthing hospitals should consider developing more specific protocols for completing birth certificates and instituting a formal process for evaluating the accuracy of reporting birth certificate information.

References

  1. Abel EL, Sokol RJ. Incidence of fetal alcohol syndrome and economic impact of FAS-related anomalies. Drug Alcohol Depend 1987;19:51-70.

  2. Freedman MA, Gay GA, Brockert JE, et al. The 1989 revisions of the US Standard Certificates of Live Birth and Death and the US Standard Report of Fetal Death. Am J Public Health 1988;78:168-72.

  3. Taffel SM, Ventura SJ, Gay GA. Revised U.S. Certificate of Birth: new opportunities for research on birth outcome. Birth 1989;16:188-93.

  4. Lynberg MC, Edmonds LD. Surveillance of birth defects. In: Halperin W, Baker EL, Monson RR, eds. Public Health Surveillance. New York: Van Norstand Reinhold, 1992.

  5. CDC. Contribution of birth defects to infant mortality -- United States, 1986. MMWR 1989;38:633-5.

  6. Hexter AC, Harris JA. Bias in congenital malformations information from the birth certificate. Teratology 1991;44:177-80.




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