Community Supports After Surviving Extremely Low-Birth-Weight, Extremely Preterm Birth

Abstract

Objective To determine special outpatient services (SOS) use, need, associated factors, and neurodevelopmental and functional outcomes among extremely preterm infants at 18 to 22 months’ corrected age. Design Retrospective analysis. Setting National Institute of Child Health and Human Development (NICHD) Neonatal Research Network. Participants Infants younger than 28 weeks’ gestational age who had been born weighing less than 1000 g at an NICHD Neonatal Research Network center from January 1, 1997, to December 31, 2000, and who were receiving follow-up at 18 to 22 months’ corrected age. Interventions Questionnaires were administered at the 18- to 22-month follow-up visit regarding SOS use since hospital discharge and the current need for SOS (social work, visiting nurse, medical specialty, early intervention, speech and language services, occupational therapy and physical therapy, and neurodevelopmental and behavioral services). Main Outcome Measures The use of and need for SOS were analyzed by gestational age. Logistic regression analysis identified factors independently associated with the use of more than 5 services and with the need for any services. Results Of 2315 infants, 54.7% used more than 3 SOS by 18 to 22 months, and 19.1% used 6 to 7 SOS. The need for any SOS was reported by approximately 37%. The following variables that were commonly associated with adverse neurodevelopmental outcomes were also associated with the use of more than 5 SOS: sepsis, birth weight, postnatal corticosteroid use, bronchopulmonary dysplasia, and cystic periventricular leukomalacia or grade 3 or 4 intraventricular hemorrhage. Male sex was associated with the need for any SOS. Although high SOS use was more likely among children with adverse neurodevelopmental outcomes, a reported need for SOS was common even among those with mild developmental impairment (39.7%) and mild cerebral palsy (42.2%). Conclusions High SOS use is common, has identifiable neonatal risk factors, and is associated with neurodevelopmental impairment. Extremely preterm survivors have substantial need for community supports regardless of their impairment level. Efforts to improve comprehensive delivery of family-centered community-based services are urgently needed.

Definition and Outpatient Management of the Very Low-Birth-Weight Infant With Bronchopulmonary Dysplasia

“…In addition to higher rates of morbidity than fullterm infants, VLBW/ELBW preterm infants experience an increased incidence of hospital readmission, especially during the first 2 years of life, which is more than twice that reported for preterm children without BPD [21][22][23][24][25]. These children also have greater need for outpatient services in early childhood [26]. These issues are (Table 3) [27][28][29][30][31].…”

Treatment of Cocaine Abuse During Pregnancy: Translating Research to Clinical Practice

“…It is important to note that even those risk factors, although not lethal, have been associated with adverse outcomes in later life. For example, low birth weight and very low birth weight increase risks of many neurodevelopmental and functional deficits [23,24].…”

Life Course Health Development Outcomes After Prematurity: Developing a Community, Clinical, and Translational Research Agenda to Optimize Health, Behavior, and Functioning

“…Even in the highest risk neonates, access to community and early intervention supports was problematic and fragmented at best (>40% not enrolled in early intervention). Those toddlers with higher rates of disability were more likely to receive more services, yet a significant unmet need for services was documented among milder cases (Hintz et al 2008). Second, a Chicago-based cohort was followed after NICU discharge and demonstrated that less than 60% of VLBW infants living in extreme poverty (<50% federal poverty level) were receiving early intervention (EI) services despite having access to a medical home and legal advocacy.…”