Educational outcomes in school age children with a history of isolated Hirschsprung disease are equivalent to their peers

Abstract

Purpose: The aim of this study was to assess real-world educational outcomes and developmental disorders in patients with a history of Hirschsprung disease compared to an age-matched control group.

Methods: With ethics approval (H2016:014) a retrospective cohort study of all children diagnosed with Hirschsprung disease at a single centre from 1992 to 2017 was performed. A 10:1 date-of-birth matched control cohort was constructed from a population-based directory. The educational outcomes were compared using the following measures: Early Developmental Instrument, Grades 3, 7, and 8 assessments, Grade 9 completion, Grade 9 performance, and high school graduation. Fisher's exact tests were used to compare the odds of failure between cases to controls. Only children who reached 4 years of age were included.

Results: A total of 75 cases with Hirschsprung disease patients were identified. Patients with Hirschsprung disease were at increased risk of failing to meet expectations on the Early Development Instrument. After entering elementary school, Hirschsprung patients were at no greater risk than their peers of failing to meet expectations on standardized testing or failing to graduate from high school.

Conclusion: Using real-world measures of academic success as a surrogate for neurodevelopmental status, our study demonstrates that patients with a history of Hirschsprung disease demonstrated poor neurodevelopmental performance in pre-school, but the educational achievements of patients did not differ from controls once they started school. These promising data can be used to mitigate preconceived notions that patients with Hirschsprung disease require special education, which may be isolating and psychosocially damaging.

Keywords: Education; Functional; Gastrointestinal; Hirschsprung disease; Outcomes.