Longitudinal Analysis of Developmental Delays in Children With Neurofibromatosis Type 1

Children with neurofibromatosis type 1 exhibit a variety of developmental delays. However, there is little information about the progression of these deficits over the course of development. Using the Parents’ Evaluation of Developmental Status measurement tool, we assessed 124 infants (0-2 years of age), preschool-age children (3-5 years of age), and school-age children (6-8 years of age) with neurofibromatosis type 1 to define the natural history of delays. School-age children exhibited significantly more areas of delay than infants or preschool-age children. Delays in math, reading, gross motor, fine motor, and self-help development were observed more frequently in older than younger children. Finally, analysis of 43 subjects for whom longitudinal assessments were available revealed that children often migrated between delayed and nondelayed groups in all areas except gross motor development. Based on these findings, we advocate early developmental screening and intervention for this at-risk pediatric population, especially in the area of gross motor function.