Follow-up Care of High-Risk Infants

A workshop on the follow-up care of high-risk infants sponsored by the National Institute of Child Health and Human Development, National Institute of Neurologic Disorders and Stroke, and the Centers for Disease Control and Prevention was held June 19-20, 2002. There are currently no standardized guidelines for provision of follow-up services for high-risk infants in tertiary care centers despite the requirement for follow-up clinic experience in the 97 approved neonatal fellowship training programs in the United States and the increasing number of centers participating in multicenter networks. As the total number of survivors at risk for neurodevelopmental morbidities increases, many clinical research questions have surfaced that can only be answered by long-term follow-up studies. There is increasing awareness of the importance of long-term outcome in randomized, controlled trials, because perinatal interventions may dramatically alter later growth and development. There is also an increased recognition of the potential disconnect between perinatal outcomes and long-term outcomes. The administration of oxygen and postnatal steroids are prime examples of interventions that may have immediate positive effects but negative long-term effects. In addition, multicenter studies have identified significant center differences in the management and developmental outcome of high-risk infants. These findings led to the recognition of the need to improve standardization and comparability of methodology and data collection within and among centers and networks as a first step toward research to improve the long-term neurodevelopmental outcome of high-risk infants. The workshop participants met to define optimal methods to assess the outcome of high-risk infants, identify gaps in knowledge about the neurodevelopmental outcome of high-risk infants, and prioritize research efforts in response to these gaps. Pediatrics 2004;114:1377– 1397. ABBREVIATIONS. NICHD, National Institute of Child Health and Development; NICU, neonatal intensive care unit; RCT, randomized, controlled trial; ELBW, extremely low birth weight; VLBW, very low birth weight; CNS, central nervous system; MRI, magnetic resonance imaging; PVL, periventricular leukomalacia; NEC, necrotizing enterocolitis; SES, socioeconomic status; MDI, Mental Development Index; PDI, Psychomotor Developmental Index; BSID-II, Bayley Scales of Infants Development-II; GMFCS, Gross Motor Function Classification System; ADHD, attentiondeficit/hyperactivity disorder; NEPSY, Neuropsychological Test; BINS, Bayley Infant Neurodevelopmental Screener; LRO, Language Receptive Organization; LEO, Language Expressive Organization; CPT, Continuous Performance Test; CAT/CLAMS, Cognitive Adaptive Test/Clinical Linguistic and Auditory Milestone Scale; TOVO, Test of Variables of Attention; CBCL, Child Behavior Check List; QOL, quality of life; CHQ, Child Health Questionnaire; HRQL, health-related quality of life. BACKGROUND Advances in perinatal intensive care have been associated with improved survival of highrisk neonates but have not resulted in decreased morbidity. Small sample sizes, heterogeneity of cohorts and methodology, diversity of perinatal clinical practice, and the high cost of randomized, controlled trials (RCTs) and follow-up care have all contributed to the lack of rigorous data on the sequelae of preterm delivery and the therapies used to improve the long-term outcome of high-risk infants. In response to this need, a workshop on follow-up care of high-risk infants sponsored by the National Institute of Child Health and Development (NICHD) and the National Institute of Neurologic Diseases and Stroke was held in Bethesda, Maryland, on June 19 and 20, 2002. The goal of the workshop was to define optimal methods to assess the outcome of high-risk infants, identify gaps in knowledge about the neurodevelopmental outcome of high-risk infants, and prioritize research efforts in response to these gaps. There are currently no standardized guidelines for provision of follow-up services for high-risk infants in tertiary care centers despite the requirement for follow-up clinic experience in the 97 approved neonatal fellowship training programs in the United States and the increasing number of centers participating in multicenter networks. As the total number of survivors at risk for neurodevelopmental morbidities increases, many clinical research questions have surfaced that can only be answered by long-term follow-up studies. There is increasing awareness of the importance of long-term outcome in RCTs, because perinatal interventions may dramatically alter later growth and development. There is also an increased recognition of the potential disconnect between perinatal outcomes and long-term outcomes. The administration of oxygen and postnatal steroids are prime examples of interventions that may have immediate positive effects but negative long-term effects.1–4 In addition, multicenter studies have identified significant center differences in the management and developmental outcome of high-risk infants.5–8 These findings led to the recognition of the need to improve standardization and comparability of methodology and data collection within and among centers and networks as a first step toward research to improve the long-term neurodevelopmental outcome of high-risk infants. OBJECTIVES OF THE WORKSHOP 1. To discuss the benefits of neonatal follow-up programs for nurseries providing neonatal intensive care unit (NICU) care. Accepted for publication Aug 2, 2004. doi:10.1542/peds.2004-0866 PEDIATRICS (ISSN 0031 4005). Published in the public domain by the American Academy of Pediatrics. PEDIATRICS Vol. 114 No. 5 November 2004 1377 by guest on October 30, 2017 http://pediatrics.aappublications.org/ Downloaded from 2. To define who should be followed and what characteristics of premature infants and term infants are associated with an increased risk for neurodevelopmental morbidity. 3. To define the (1) the optimal ages of follow-up assessment and (2) the optimal assessment measures and to minimize barriers to assessment caused by motor, vision, or hearing impairments. 4. To discuss approaches to selection of controls and maintaining follow-up. 5. To describe alternative, less costly methods and approaches to assessment for the community physician. 6. Describe the challenges encountered in multicenter networks. 7A. To identify gaps in knowledge about assessment of neurodevelopmental outcome among highrisk infants and the mechanisms contributing to these outcomes. 7B. To further advance areas of investigation. 8. To propose future research questions. OBJECTIVE 1: DETERMINE THE BENEFITS OF NEONATAL FOLLOW-UP PROGRAMS AT PERINATAL CENTERS The 2 primary areas of responsibility for neonatal follow-up programs are surveillance and research.