Motor and cognitive outcomes in pediatric intestinal failure: A longitudinal cohort study

Background: Improved survival in pediatric intestinal failure (IF) necessitates a focus on neurodevelopmental outcomes. Existing cross-sectional research demonstrates increased risk of developmental delay. This novel study explores longitudinal motor and cognitive outcomes, and associated risk factors, in a single cohort across infancy to early school age. Material And Methods: Retrospective review of children admitted to an IF program < 4 months of age between 2011 and 2016, who completed: motor assessment between 4 and 15 months corrected age (CA), motor and cognitive assessment between 12 and 32 months CA and 4-8 years. Descriptive analysis of medical, socio-demographic variables and assessment scores. Outcomes were assessed using linear mixed methods, with multi-variable analyses to explore main effects and significant interactions with time. Results: Study population included 41 children (56% male), median (IQR) gestational age 33 (28.5, 35.5) weeks and length of first year hospitalization 209 (140.8, 255) days. Five children (12%) had central nervous system (CNS) co-morbidities. Gross motor scores were below average at pre-school time-points, with significant improvement by school age; whereas fine motor and cognitive scores significantly decreased at 26-32 months CA, compared to largely average scores at 12-15-months CA and school age. Main effects predicting poorer scores included: birth weight, early motor delay, CNS co-morbidity, auditory impairment, NEC diagnosis,