ELBW Follow-up – Status

2015 Cohort – A cohort of ELBW infants born during 2015 are being tracked and evaluated between 18 and 24 months corrected age. The data collection for this cohort continues through May 2018.

2016 Cohort – A cohort of ELBW infants born during 2015 are being tracked and evaluated between 18 and 24 months corrected age. The data collection for this cohort continues through May 2019.

From 2004 to 2014 the Parental Interview and Reporting Questionnaire (PIRQ) was used to assess parental perception of infant health status and development.

Collection of data from the PIRQ allowed understanding of how key questions asked of parents in a structured interview format by a non-physician can be used to predict severe disability. These data were presented in abstract form at the Pediatric Academic Society meetings in 2005, 2006, 2007 and 2012.

Recently Completed Cohort: 2014 Birth Year

Status: Completed

Results: Extremely low birth weight infants (401-1000g) or extremely low gestational age infants (between 22 weeks 0 days and 27 weeks 6 days), born during 2014 and who survived discharge were tracked and evaluated between 18 and 24 months corrected age at participating Vermont Oxford Network centers. Thirty-five centers participated in this year’s project. One thousand seven hundred and ninety-seven infants survived and were eligible for follow-up. Of those infants, 901 received health and neurodevelopmental status evaluations. Twenty-five percent of these evaluated infants were severely growth retarded (< 3rd percentile body size) and 11% had microcephaly (< 3rd percentile head size). Thirty-seven percent of the infants were re-hospitalized. Overall, 22% had severe disability defined as having one of the following: bilateral blindness (2%), hearing impairment requiring amplification (5%), inability to walk with support (21%), cerebral palsy (35%) or cognitive deficit (any BSID < 70) (83%).

Previous Three Years: 2012-2014 Birth Year Cohort

Results: Extremely low birth weight infants (401-1000 g) or extremely low gestational age infants (between 22 weeks 0 days and 27 weeks 6 days) born between 2012-2014 who survived discharge home were tracked and evaluated between 18 and 24 months corrected age at participating Vermont Oxford Network Centers. Thirty-nine centers participated. Data completed for the 2014 Cohort year was combined with data for the completed 2012 and 2013 cohorts and analyzed as a three year cohort. Five thousand three hundred and forty-eight survived and were eligible for follow-up. Of those infants, 2,690 received health and neurodevelopmental status evaluations. Twenty-five percent of these evaluated infants were severely growth retarded (< 3rd percentile body size) and 12% had microcephaly (< 3rd percentile head size). Thirty-seven percent of the infants were re-hospitalized. Overall, 21% had severe disability defined as having one of the following: bilateral blindness (2%), hearing impairment requiring amplification (6%), inability to walk with support (21%), cerebral palsy (34%), or cognitive deficit (any BSID < 70) (81%).