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.

The Relationship Between Behavior Ratings and Concurrent and Subsequent Mental and Motor Performance in Toddlers Born at Extremely Low Birth Weight

“…Approximately 58% of this ELBW cohort received early intervention services by 18 months of age, similar to previous reports of children born at ELBW (Hintz, Kendrick, Vohr, Poole, & Higgins, 2008; Wang et al, 2009). Early intervention underenrollment is a significant concern among this population given the likelihood of heightened medical, social, and developmental risk associated with lower birth weights.…”

“…Clinicians might find early behavior ratings, in conjunction with measures of mental and motor performance, helpful in determining which children are likely to achieve appropriate developmental milestones, identifying children who might need more frequent follow-up, and assessing the potential need for early intervention among children who display early behavioral deficits. Approximately 58% of this ELBW cohort received early intervention services by 18 months of age, similar to previous reports of children born at ELBW (Hintz, Kendrick, Vohr, Poole, & Higgins, 2008;Wang et al, 2009). Early intervention underenrollment is a significant concern among this population given the likelihood of heightened medical, social, and developmental risk associated with lower birth weights.…”

Special Care and School Difficulties in 8-Year-Old Very Preterm Children: The Epipage Cohort Study

“…This study demonstrated a correlation between a significant increase in difficulties in school at the age of 8, the need for support at school or special care and a decrease in the cognitive score at the age of five years [19]. In cases of mental retardation with a cognitive score <70, rates of special care and/or support at school seemed appropriate, but in cases of moderately low cognitive scores (70–84), only 65% received special care and/or support at school.…”

Early intervention influences positively quality of life as reported by prematurely born children at age nine and their parents; a randomized clinical trial

“…This is in agreement with previous reports [ 17 ], but somewhat surprising in view of the extensive follow-up program that offered continued opportunities to ask for help. Previous studies have identified parents of preterms as frequently experiencing a lack of professional support throughout childhood [ 17 , 53 ], and have suggested that this influences parents’ reports of QoL. Even though all families in the current study could potentially have benefitted equally from the follow-up program, and enjoyed equality of support in their search for other services (psychological, pedagogical, physiotherapy) [ 30 ], significant differences persisted.…”