Follow-up Care of High-Risk Infants

Abstract

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.

The Role of the Primary Care Pediatrician in the Care of the NICU Graduate

“…The parents must also exhibit competence in feeding, basic infant care, bathing, cord and genital care, as well as CPR training and ability to detect early signs and symptoms of illness. If the infant is to be discharged home on medications, the caretaker must show understanding of safety and maintenance of equipment and attached devices as well as how to administer medications [5].…”

“…A premature infant discharged from the NICU requires special considerations when care is transferred to the primary care pediatrician. These points of importance can be divided into biological factors including extreme prematurity, neonatal infections, bronchopulmonary dysplasia, severe growth restriction, intraventricular hemorrhage and neurological sequelae, interventional factors such as resuscitation, postnatal steroids, prolonged ventilation and oxygen therapy, prolonged IV nutrition, blood transfusions, and surgical interventions, social and environmental factors for the infant including parental education and socioeconomic status, stressors in the household, and insurance for the ability to follow up care, parentinfant bonding, and infant growth and nutrition [5]. Communication of the NICU team at discharge to the primary care pediatrician is essential in minimizing poor outcomes resulting from non-disclosure of critical information regarding the infant's hospital course.…”

Our Responsibility to Follow Through for NICU Infants and Their Families

“…Establish a reach out and read program for patients and siblings [187][188][189][190][191][192] 46. Provide medical and developmental follow up [128][129][130][131][132][133][134][135] 47. Provide resources regarding available public benefits at follow-up visits 100 48.…”

Impact of the Coronavirus Pandemic on High-Risk Infant Follow-Up (HRIF) Programs: A Survey of Academic Programs

“…Most are likely to experience developmental delays and problems which require standardized surveillance with evidence-based assessments and multidisciplinary teams [4]. To manage these high-risk infants after discharge, HRIF provides specialty care, either through stand-alone clinics or programs that incorporate complex care, pulmonary, neurology, therapists to provide comprehensive clinical care, parent education, and early interventions [5,6].…”