Neonatal Follow-up Programs in the New Millennium

Abstract

After completing this article, readers should be able to: 1. Describe the key participants in a multidisciplinary follow-up team. 2. Outline strategies for long-term tracking of families. 3. Describe strategies for developing effective standardized study protocols. 4. Delineate the relationship between study objectives and assessments identified as appropriate for the study. 5. Characterize the components of a data management system. One of the earliest studies of the outcomes of very low-birthweight (VLBW) infants (birthweights between 605 and 1,260 g) was presented at the 1950 American Academy of Pediatrics meeting by Hess. Infants had been cared for at the Sarah Morris Hospital in Chicago between 1922 and 1950. Dr Hess conducted comprehensive follow-up evaluations on 92% of survivors and identified a 41% incidence of some handicap and a 15% incidence of severe handicap. (1) This initial comprehensive long-term follow-up study of preterm infants led to greater optimism about the outcomes of the VLBW infants, and, as a result, numerous premature nurseries were established throughout the United States in the 1950s and 1960s. Follow-up studies of VLBW (<1,500 g) infants born between 1947 and 1950 conducted by Lubchenco (2) in Colorado revealed a handicap rate of 68%. Dr Lubchenco was one of the first investigators to evaluate other aspects of long-term outcome, including growth, behavior, and school performance. It was also during this time that investigators began to evaluate the relationship between specific interventions and outcomes. Although Terry (3) first described retrolental fibroplasia (RLF) in 1942, a report demonstrating a distinct relationship between RLF and oxygen administration was not published until 1956. (4) The immediate response to the findings of this study was decreased use of oxygen and a secondary increase of neuro-developmental handicap among survivors. All of these events contributed to recognition of the need to monitor the interventions used in a premature nursery and …