Methods for surveillance of fetal alcohol syndrome: The fetal alcohol syndrome surveillance network II (FASSNetII) – Arizona, Colorado, New York, 2009 ‐ 2014

Abstract

Surveillance of fetal alcohol syndrome (FAS) is important for monitoring the effects of prenatal alcohol exposure and describing the public health burden of this preventable disorder. Building on the infrastructure of the Fetal Alcohol Syndrome Surveillance Network (FASSNet, 1997-2002), in 2009 the Centers for Disease Control and Prevention awarded five-year cooperative agreements to three states, Arizona, Colorado, and New York, to conduct population-based surveillance of FAS. The Fetal Alcohol Syndrome Surveillance Network II (FASSNetII, 2009-2014) developed a surveillance case definition based on three clinical criteria: characteristic facial features, central nervous system abnormalities, and growth deficiency. FASSNetII modified the FASSNet methods in three important ways: 1) estimation of a period prevalence rather than birth prevalence; 2) surveillance of FAS among school-age children (ages 7-9 years) to better document the central nervous system abnormalities that are not apparent at birth or during infancy; and 3) implementation of an expert clinical review of abstracted data for probable and confirmed cases classified through a computerized algorithm. FASSNetII abstracted data from multiple sources including birth records, medical records from child development centers or other specialty clinics, and administrative databases such as hospital discharge and Medicaid. One challenge of FASSNetII was its limited access to non-medical records. Therefore, the FAS prevalence that could be estimated was that of the population identified through an encounter with the healthcare system. Clinical and public health programs that identify children affected by FAS provide critical information for targeting preventive, medical and educational services in this vulnerable population.

Substance Use in the Perinatal Period

“…One such suggestion is the screening of pregnant women in clinical settings, to provide clinicians with an opportunity to review health practices and encourage changes [98]. Surveillance, particularly of fetal alcohol syndrome, has also been suggested as an activity that may reduce alcohol-related consequences associated with perinatal drinking [99], as well as efforts to better identify groups at high risk of drinking during pregnancy earlier rather than later [100]. For example, one recommendation is to identify non-pregnant women who intend to get pregnant but continue to drink, as these women may unknowingly expose a developing fetus to alcohol for weeks or months [101-103].…”

Recognition of clinical characteristics for population‐based surveillance of fetal alcohol syndrome

“…The Fetal Alcohol Syndrome Surveillance Network II (FASSNetII) was a population-based surveillance system that collected standardized information from multiple record sources on 7- to 9-year old (birth years 2001–2003) children evaluated for FAS (O’Leary et al, 2015). Cases were obtained from Arizona, seven counties in the Denver metro area of Colorado (Adams, Arapaho, Boulder, Broomfield, Denver, Douglas, and Jefferson counties), and nine counties in western New York (Allegany, Cattaraugus, Chautauqua, Erie, Genesee, Monroe, Niagara, Orleans, and Wyoming counties).…”

“…Cases were obtained from Arizona, seven counties in the Denver metro area of Colorado (Adams, Arapaho, Boulder, Broomfield, Denver, Douglas, and Jefferson counties), and nine counties in western New York (Allegany, Cattaraugus, Chautauqua, Erie, Genesee, Monroe, Niagara, Orleans, and Wyoming counties). A full description of the FASSNetII methodology and the case classification algorithm has been reported previously (O’Leary et al, 2015). The surveillance system included all children living in the catchment areas during 2010 with a date of birth between January 1, 2001, and December 31, 2003.…”

“…Clinical characteristics were considered present when there was a qualitative statement in the medical record or specific documentation of their appearance, absent if the provider documented absence of the characteristic and “not reported” when there was no mention or insufficient notation of the characteristic in the clinical visit note. Three characteristics (palpebral fissures less than the 10th percentile, microcephaly, and growth delay) were considered present when numerical measurement was reported or calculated to be less than the 10th percentile by standards (O’Leary et al, 2015). Developmental delay included a third category of “insufficient documentation” to demonstrate that providers only reported a single domain from a standardized developmental test.…”

“…Case definitions of confirmed and probable FAS were classified through the FASSNetII computed algorithm that consolidates all individual visit data entries accumulated from multiple record sources for each case using clinical criteria in the three domains (O’Leary et al, 2015). Confirmed cases contained documentation of clinical features in all three domains; probable cases contained documentation of features for facial dysmorphology plus one other domain.…”