Utility of the Ages and Stages Questionnaire, Third Edition, in a Comprehensive Sickle Cell Disease Clinic

Objective: Young children diagnosed with sickle cell disease (SCD) are at risk for neurocognitive delays. Traditional neurocognitive measures are not realistic for frequent, repeated screenings in a medical clinic setting. The current study sought to (a) examine the clinical utility of the Ages and Stages Questionnaire (3rd ed.; ASQ-3) for repeated developmental screenings in an integrated behavioral health model within a SCD specialty clinic and (b) highlight case examples of ongoing developmental monitoring. Method: Parents of 52 children aged 3 months to 4 years old were administered the ASQ-3. The ASQ-3 screener provides five domain scores (communication, gross motor, fine motor, problem solving, personal social), which translate into pass, at-risk, or fail categories using age-based cut-off scores. Families participated in three administrations in a SCD clinic. Results were used by an interdisciplinary team to inform patient care. Results: The majority of the sample (90% to 96%) screened in the passing category across domains at baseline. However, 17% to 30% of the sample had at least one at-risk or failing score in any one domain across administrations. Rates of passing scores declined by 5% to 17% across administrations. Problem solving and personal social domains showed the largest declines. Conclusions: Results of the current study supported utility of the ASQ-3 in this specialty clinic setting to detect children at risk for developmental delays. In a high-risk population such as SCD, repeated, prospective developmental screening of young children with a brief screening measure can detect those in need of developmental supports and allows for timely referrals to early intervention. Implications for Impact Statement Children followed in a medical clinic for sickle cell disease (SCD) care participated in developmental screening with a psychology provider as a routine part of their medical visit. Most children (90% to 96%) passed the screener at their first visit. However nearly one third of the children had at least one at-risk or failing score in one of five developmental domains as they got older. Monitoring young children with SCD using a brief screening measure can identify children in need of developmental supports and help get them connected with early intervention and other developmentally supportive services.