Aim To summarize developmental delay among infants and toddlers with sickle cell disease (SCD). Method This systematic review included studies that reported developmental outcomes of children with SCD between 0 months and 48 months of age and followed standards set forth by the Preferred Reporting Items for Systematic Reviews and Meta‐Analyses (PRISMA) guidelines. Results Ten studies were included, describing 596 unique developmental assessments. The rate of developmental delay ranged from 17.5% to 50% and increased with age. Cognition was the only domain included in all studies and the most frequently identified delay. One study reported that more severe SCD genotypes predicted worse development, while five studies reported no difference in rates of developmental delay across genotypes. Interpretation These findings emphasize the need for standardized screening to identify children with SCD at risk of delay at a young age to facilitate appropriate referrals for therapeutic intervention. Frequent and comprehensive developmental screening is necessary among all SCD genotypes.

Background: Children with sickle cell disease (SCD), a genetic blood disorder, are at increased risk of developmental delays but are not routinely referred to Early Intervention (EI). The study aimed to understand the need for and acceptability and feasibility of screening and providing EI services to children with SCD. Methods: Eleven EI partners and eight caregivers of children aged 3 to 5 years with SCD completed semi-structured interviews and short surveys. Results: Three main themes emerged from interviews and surveys: (a) awareness of disparities and moderate caregiver knowledge of child development, (b) high acceptability of screening for EI, and (c) the need for partner education to increase buy-in and feasibility of potential programming. Conclusion: Partners identified a clear need for EI screening and referral for children with SCD and indicated that a future program would be acceptable and feasible. However, education and incentives are needed to encourage providers to change current practice patterns.

Date Presented 04/01/2022 Around half of children with sickle cell disease (SCD) have a developmental delay by the age of 3, but developmental screening and intervention are not part of standard care. Through interviews with caregivers and early intervention providers, we identified three key themes to support successful programing: acceptability, recognition of systemic disparities, and buy-in. Findings will support the implementation of a screening program to enhance the health and well-being of children with SCD. Primary Author and Speaker: Catherine R. Hoyt Contributing Authors: Jeni Erickson, Lingzi Luo, Ashley Housten, Allison King