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

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.

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.

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, surgeries, sepsis, and prolonged hospitalization.

Children with IF demonstrate developmental vulnerably in infancy and preschool years, with promising motor and cognitive gains observed by early school age. Identification of key risk factors can guide IF teams in providing targeted therapeutic interventions, mitigating longer term developmental risks.