Early Identification Of Developmental Delay Among Infants And Toddlers With Sickle Cell Disease

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PROJECT SUMMARY/ABSTRACT This K23 application proposes a research and career development plan for Catherine Hoyt, PhD, OTD to establish herself as an independent rehabilitation scientist focused on the early identification and intervention for developmental deficits among infants and toddlers with sickle cell disease (SCD). SCD is the most common monogenic disorder in humans and is primarily inherited by who identify as Black or of African descent. Complications associated with SCD (e.g., infection, pain, stroke) are common in the first years of life. In our earlier work, we found that developmental deficits were present in > 50% of children with SCD before the age of 3 but are none had been diagnosed or referred to intervention services. Further, children whose caregivers participated in a home-based caregiver education program demonstrated improved test scores on standardized measures. Thus, when developmental deficits are overlooked, children miss a critical opportunity for intervention that could improve their developmental trajectory. The American Society of Hematology (ASH) recommends frequent developmental screening starting in the first years of life for all children with SCD. Yet few, if any, studies have described the incidence and severity of developmental deficit among children with SCD compared to controls. Consistent with the American Academy of Pediatrics (AAP) guidelines, this research will evaluate children with SCD at 9, 18, and 30 months using the best available developmental measure, the Bayley Scales of Infant Development-4 (Bayley), to determine the incidence of developmental deficit over the first 3 years of life compared to demographically match peers (n = 100, Aim 1). If developmental deficits are identified, scores will be shared with the child's healthcare team so they can be addressed. Based on theory and evidence, the proposed study will also test a multi-component Sickle Cell Collaboration for Child Development (SCCCD) intervention. The SCCCD combines skilled therapeutic intervention to address developmental deficits, the Parents as Teachers® curriculum and specific SCD education. Our innovative SCCCD intervention is adapted from a pilot study and will provide 12 home visits to caregivers and children with SCD over the course of 1 year (n = 25, Aim 2). Interviews with caregivers who participated, as well as those who declined, will identify contextual determinants (i.e., facilitator and barriers) to prepare for future testing and scaling up of the SCCCD intervention (Aim 3). The results from this K23 award will provide data to understand the onset of developmental deficit in this understudied population and identify the next steps to conduct a randomized control trial to test our SCCCD intervention in an R01 level grant submission. These mentored research aims, combined with a career development plan for advanced training in implementation science (Goal A), mixed methods (Goal B), prospective trial design (Goal C) and professional development (Goals D, E) will enable Dr. Hoyt to launch a career as an independent scientist.