Longitudinal Neurodevelopmental and Adaptive Functioning in Infants and Toddlers With Multiple Suture or Syndromic Craniosynostosis.

Given the low incidence of multisuture and syndromic craniosynostosis (CS), information about development over time is limited for these patients. This longitudinal prospective study included neurodevelopmental evaluations with the Bayley Scales of Infant and Toddler Development-Third Edition (Bayley-III) at 1 to 4 time points: preoperatively, 6 months and 18 months postoperatively, and at age 36 months. Caregivers also reported on general adaptive functioning, developmental milestones, and therapies received. Scores were described at each time point and compared with test norms. Pearson correlations examined associations between sociodemographics, surgery age, and delays. Participants had syndromic CS (n=35) or multisuture CS not associated with a syndrome (n=20). Surgery was completed at average ages of 7.3±2.8 to 9.5±1.3 months (96% had surgery under age 12 mo). Participants were mostly Latino (67%) males (53%) with public insurance (65%). Participants with bicoronal or multisuture CS not associated with a syndrome had means similar to norms, normative adaptive functioning and milestones, and few had therapies (11%). Participants with syndromic CS had significantly (P<.05) lower Bayley-III and adaptive functioning means than norms with medium to large effect sizes (Cohen d range =-0.60 to -1.29). Developmental milestones for children with syndromic CS ranged from average to significantly delayed and therapies were common (37%-49%). The only significant correlation was that lower socioeconomic status was associated with delays (r=-0.41, P<.05) for the syndromic CS group. Developmental evaluations are recommended to ensure needs are identified and appropriate developmental supports are provided.