Community supports after surviving extremely low-birth-weight, extremely preterm birth: special outpatient services in early childhood.
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.


METHODS
Retrospective analysis.


METHODS
National Institute of Child Health and Human Development (NICHD) Neonatal Research Network.


METHODS
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.


METHODS
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).


METHODS
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.
Hintz
Susan R
SR
Division of Neonatal and Developmental Medicine, Department of Pediatrics, Stanford University School of Medicine, Palo Alto, California 94304, USA. srhintz@stanford.edu
Kendrick
Douglas E
DE
Vohr
Betty R
BR
Poole
W Kenneth
WK
Higgins
Rosemary D
RD
D000553:Ambulatory Care / Q000592:standards* / Q000706:statistics & numerical data; D002648:Child; D002662:Child Health Services / Q000592:standards* / Q000706:statistics & numerical data; D002675:Child, Preschool; D003153:Community Health Services / Q000592:standards* / Q000706:statistics & numerical data; D016001:Confidence Intervals; D003266:Continuity of Patient Care / Q000592:standards / Q000706:statistics & numerical data; D002658:Developmental Disabilities / Q000175:diagnosis / Q000453:epidemiology / Q000628:therapy*; D004185:Disability Evaluation; D005260:Female; D006801:Humans; D007223:Infant; D052577:Infant, Extremely Low Birth Weight; D007231:Infant, Newborn; D007234:Infant, Premature; D007235:Infant, Premature, Diseases / Q000175:diagnosis / Q000401:mortality / Q000628:therapy; D007363:Intensive Care Units, Neonatal; D016015:Logistic Models; D008297:Male; D015999:Multivariate Analysis; D020380:Needs Assessment; D016017:Odds Ratio; D011787:Quality of Health Care; D012189:Retrospective Studies; D018570:Risk Assessment; D017741:Survivors / Q000706:statistics & numerical data*; D014481:United States