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Early Developmental Screening and a Home-Based Caregiver Intervention for Infants and Toddlers With Sickle Cell
Catherine R Hoyt1, Hunter G Moore2, Ashley J Housten3
1Program of Occupational Therapy, Department of Neurology, Department of Pediatrics, Washington University School of Medicine, 4480 Clayton Ave, St. Louis, MO, 63110, United States, 1 3142861761.
Insights
Early intervention is crucial for children with sickle cell disease (SCD). This study investigates developmental delays in young children with SCD and tests a home-based intervention to improve outcomes.
Area of Science:
- Pediatric Health
- Neurodevelopmental Disorders
- Genetics
Background:
- Sickle cell disease (SCD) is a common monogenic disorder, disproportionately affecting Black and African American populations in the U.S.
- Over 50% of children with SCD under age 3 exhibit developmental delays, often undiagnosed, missing critical intervention windows.
- Previous research indicated improved developmental scores in children whose caregivers received home-based education.
Purpose of the Study:
- To determine the incidence and severity of developmental delays in children with SCD under 3 years old.
- To test a 12-month home-based intervention (Sickle Cell Collaboration for Child Development - SCCCD) for improving developmental outcomes.
- To identify contextual factors influencing the scalability of the SCCCD intervention across healthcare systems.
Main Methods:
- Children with SCD and matched controls will be assessed using the Bayley Scales of Infant Development at 9, 18, and 30 months.
- The SCCCD intervention involves occupational therapy, Parents as Teachers curriculum, and SCD-specific caregiver education via 12 monthly home visits.
- Mixed methods, including caregiver interviews, will explore facilitators and barriers to intervention implementation.
Main Results:
- As of May 2026, 50 participants (26 with SCD, 24 controls) enrolled in Aim 1.
- Recruitment for Aim 2 began in July 2025, with 5 dyads participating.
- The study is projected for completion by 2028.
Conclusions:
- This study offers the first prospective analysis of developmental trajectories in young children with SCD.
- Preliminary evidence will be established for a disease-specific, home-based intervention targeting developmental improvements.
- Findings will guide a future randomized controlled trial for the SCCCD intervention.
Background:
Sickle cell disease (SCD) is the most common monogenic disorder in humans and occurs predominantly among individuals who identify as Black or African American in the United States. In earlier work, we found that developmental delays were present in more than 50% of children with SCD before the age of 3 years, yet none had been diagnosed or referred to intervention services. Children whose caregivers participated in a home-based caregiver education program demonstrated improved scores on standardized developmental measures. When developmental delays go unidentified, children miss a critical opportunity for intervention during a period of rapid neurological change. Yet few, if any, studies have described the incidence and severity of developmental delays among children with SCD compared to controls.
Objective:
The purpose of this study is to determine the incidence and severity of developmental delays in children with SCD under 3 years of age (aim 1), test a 12-month home-based Sickle Cell Collaboration for Child Development (SCCCD) intervention (aim 2), and conduct a mixed methods study to identify contextual determinants to prepare for future scaling of the SCCCD intervention across health care systems (aim 3).
Methods:
Consistent with American Academy of Pediatrics guidelines, children with SCD will be evaluated at 9, 18, and 30 months using the Bayley Scales of Infant Development, Fourth Edition, to determine the incidence of developmental delay over the first 3 years of life compared to demographically matched peers (n=100, aim 1). The SCCCD intervention, adapted from a pilot study, combines skilled occupational therapy, the Parents as Teachers curriculum, and SCD-specific caregiver education, delivered over 12 monthly home visits (n=25, aim 2). Interviews with caregivers who participated in and those who declined the intervention will identify contextual determinants (ie, facilitators and barriers) to inform future testing and broader implementation of the SCCCD (aim 3).
Results:
This project has been approved by the Institutional Review Board at Washington University School of Medicine (202104034 and 202407080). As of May 31, 2026, a total of 50 participants (26 children with SCD and 24 typically developing children for the comparison cohort) have participated for aim 1. Aim 2 recruitment began in July 2025, and 5 caregiver/child dyads have participated so far. The study is expected to be completed by 2028.
Conclusions:
These findings will provide the first prospective characterization of developmental trajectories in children with SCD across the first 3 years of life and establish preliminary evidence for a disease-specific, home-based intervention to improve developmental outcomes in this underserved population. The results will directly inform a future randomized controlled trial of the SCCCD intervention.