791 - NIH Toolbox Feasibility in Preschool-Aged Children Born Extremely Preterm in the Pre-Vent/Post-Vent Cohort

Publication Number: 791.5891

Raye-Ann deRegnier, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, IL, United States; Erin Lonergan, Ann & Robert H. Lurie Children's Hospital of Chicago, Palos Heights, IL, United States; Lynn D. Boswell, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, IL, United States; Casey Rand, lurie childrens hospital and stanley manne research center, Chicago, IL, United States; Debra E. Weese-Mayer, Northwestern University Feinberg School of Medicine; Ann & Robert H Lurie Children’s Hospital of Chicago, Chicago, IL, United States; Deanne Wilson-Costello, Case Western Reserve University School of Medicine, Cleveland, OH, United States; Arlene Zadell, UH Rainbow Babies & Children's Hospital, Cleveland, OH, United States; Alini Schott, University of Miami Leonard M. Miller School of Medicine, Miami, FL, United States; Ana Cecilia. Aguilar, University of Miami, Miami, FL, United States; Laura Chavez, University of Miami Miller School of Medicine, Miami, FL, United States; Michelle D.. Berkovits, University of Miami, Miller School of Medicine, Miami, FL, United States; Rachel L. Benz, UAB, Birmingham, AL, United States; Namasivayam Ambalavanan, University of Alabama School of Medicine, Birmingham, AL, United States; The Post-Vent Investigators, NIH, Charlottesville, VA, United States

Background: Infants born extremely preterm often experience prolonged physiologic instability, including apnea, bradycardia, and hypoxemia, increasing risk for later neurodevelopmental impairments (NDI).

Objective: This NHLBI-funded multicenter study evaluates the relationship between NICU physiologic instability and NDI using the NIH Toolbox (TB, ver. 3) in children born at < 29 weeks gestational age (GA). The feasibility of TB for this population is unreported, and the current version lacks parental report of abilities and adaptive behaviors.

Design/Methods: Infants born at 23-28 6/7 weeks GA were enrolled at Lurie Children’s Hospital, University Hospitals Cleveland Medical Center, University of Miami, and University of Alabama-Birmingham. The cohort includes children averaging 5 years of age. NIH-TB cognition, sensation, and motor domains (Table 1) were administered by trained personnel at each site. Parents reported disabilities, including cerebral palsy, autism, and hearing impairment (aided or cochlear implant). They also completed a 6-item inattention/hyperactivity scale derived from the Diagnostic and Statistical Manual of Mental Disorders, fourth edition (DSM-IV).

Results: 128/146 eligible children attempted TB. Figure 1 shows participant flow through the study. Table 1 shows completion rates for the TB tests; 2 children completed no tests, and 51% of the children completed all 10 tests. Individual test completion ranged from 63% for standing balance (SB) to 96% for the 2-minute walk test. 29% of the cohort lacked an early childhood composite (ECC) score due to an incomplete cognitive battery. Completion rates correlated with disabilities and inattention/hyperactivity symptoms (Table 2). In multivariable regression analyses, >1 missing cognitive domain subtest was associated with any disability (OR: 3.95, 95% CI 1.46-10.73) and 6 attention/hyperactivity symptoms (OR: 3.34, 95% CI 1.09-10.27). Missing motor domain subtests were associated with any disability (OR: 4.83, 95% CI 1.71-13.65), but not inattention/hyperactivity symptoms.

Conclusion(s): In this cohort, about half could not complete the full TB battery. SB was the most difficult subtest to complete. Children with developmental disabilities and inattention/hyperactivity symptoms were able to participate but struggled with test completion more than children without these problems. Further research into test accommodations is needed to enable full NIH-TB participation in cohorts of young children with developmental risk factors.

Funding: R01 HL157256

Figure 1
Participant flow through the study.

Table 1
NIH Toolbox Completion Rates by Instrument, Domain, and Battery (N=128)

Table 2
Percentage of Domain Completion by Disability and Attention Concerns