Fetal alcohol syndrome surveillance: Age of syndrome manifestation in case ascertainment

Background: Fetal alcohol syndrome (FAS) is a leading cause of developmental disability (Abel & Sokol,). Active public health surveillance through medical record abstraction has been used to estimate FAS prevalence rates, typically based on birth cohorts. There is an extended time for FAS characteristics to become apparent in infants and young children, and there are often delays in syndrome recognition and documentation. This methodological study analyzes the age at case ascertainment in a large surveillance program. Methods: The Fetal Alcohol Syndrome Surveillance (FASSLink) Project, funded by the Centers for Disease Control and Prevention, sought to estimate FAS prevalence rates in eight U.S. states. FASSLink used linked abstractions from multiple health care records of suspected cases of FAS. The present study analyzed data from this effort to determine the child's age in months at confirming abstraction. Results: The average age at abstraction for confirmed/probable FAS cases (n=422) was 48.3 (±19.5) months with a range of 0 to 94 months. Age of ascertainment varied by state and decreased with each birth year; the number of cases ascertained also decreased in a steep stepwise gradient over the 6 birth years in the study. Conclusion: FAS surveillance efforts should screen records of children who are much older than is typical in birth defects surveillance. To best establish rates of FAS using medical records abstraction, surveillance efforts should focus on 1-year birth cohorts followed for a fixed number of years or, if using multi-year cohorts, should implement staggered end dates allowing all births to be followed for up to 8 years of age.