Follow-up data - Their use in evidence-based decision-making

This article discusses the significance of follow-up data, methods used for collecting such data about high-risk fetuses and neonates, and the application of these data to evidence-based clinical decision-making. A comprehensive follow-up includes collection of data about neonatal predictor of outcome, developmental and neurosensory assessment before school entry; evaluation of cognitive function, behavioral competencies, and academic performance at school age; and data about the family's resources and psychosocial functioning. From these assessments inferences may be drawn about health related quality of life. Recent studies have used neurosensory assessments and measures of early cognitive function, performed at 18 to 36 months of adjusted age, to classify research subjects with regard to major neurosensory impairments. This approach is not prohibitively expensive and provides a highly valid prediction about the presence or absence of major disabilities. Although collection of data about follow-up outcomes is expensive and delays introduction of promising therapies for fetuses and newborns, such data have often been essential to evidence-based decisions about therapies for fetuses and newborns.