Assessment of Early Development in Congenital Heart Disease Using a Novel Caregiver Rating Method

Early identification of the infants with critical congenital heart disease (CCHD) exhibiting developmental delays would allow for timely interventions to reduce adverse longer-term consequences. Web-based caregiver assessments of developmental milestones complement direct testing as a means for identifying delays outside of the clinic setting. The purpose of this study was to evaluate the validity of a recently developed caregiver rating of early development, the PediaTrac™, as an alternative to ratings of developmental milestones in a sample of infants and toddlers with CCHD. The PediaTrac, along with ratings of developmental milestones, on the Ages and Stages Questionnaire, 3rd Edition (ASQ-3), were administered to caregivers of 45 infants and toddlers with CCHD ages 2 to 18 months. PediaTrac ratings were analyzed using item response theory modeling to obtain scores reflecting skill levels in the motor and social-communication-cognition domains. Validity was examined by comparing scores to those for a reference group of term-born infants/toddlers assessed in a prior study and to delays in milestones on the ASQ-3 and medical and sociodemographic risk factors. Motor scores were lower than expected for the CCHD sample relative to term reference group, t(44) = - 3.269, p = 0.002, indicating a high rate of motor deficits (31%). Although the CCHD sample did not differ from the reference group in the social-communication-cognition domain, lower scores in one or both domains were associated with delayed milestones on the ASQ-3, longer length of hospitalizations, and single ventricle physiology. Findings confirm delays in motor development in infants and toddlers with CCHD and support PediaTrac as a valid alternative to milestone-based caregiver screening of early development in this population.