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Updated: Jun 26, 2025
A Precision Medicine Tool for Measurement and Monitoring of Hemoglobin S in Sickle Cell Disease Patients Receiving Transfusion Therapy
"Everyone screens to some extent": Barriers and facilitators of developmental screening among children with sickle
Catherine R Hoyt1,2,3, Lingzi Luo4, Hannah E Rice5
1Program in Occupational Therapy, Washington University School of Medicine, St. Louis, Missouri, USA.
Insights
Developmental screening for children with sickle cell disease (SCD) is inconsistent. Providers need standardized tools and guidance to improve early identification of developmental delays in young children with SCD.
Area of Science:
- Pediatric Health
- Hematology
- Developmental Pediatrics
Background:
- Developmental delays are prevalent in children with sickle cell disease (SCD).
- Current guidelines recommend consistent developmental screening for early identification and intervention.
- Adherence to screening guidelines is inconsistent among healthcare providers.
Purpose of the Study:
- To assess current developmental screening practices for children aged 0-3 years with SCD.
- To identify barriers and facilitators to implementing effective developmental screening.
- To inform strategies for improving developmental surveillance in this population.
Main Methods:
- A mixed-methods approach using the EPIS framework.
- Phase 1: Survey of primary care providers and hematologists on screening practices.
- Phase 2: Organizational survey and semi-structured interviews to explore barriers and facilitators.
Main Results:
- Screening measure usage was variable; Modified Checklist for Autism in Toddlers (77%) and Ages and Stages Questionnaire (55%) were most common.
- Providers expressed willingness to improve practices (mean=4.4/5).
- Key themes: lack of standardized/SCD-specific screening, benefits of multidisciplinary teams, and healthcare system limitations as barriers.
Conclusions:
- Developmental screening for young children with SCD is currently inconsistent and inadequate.
- Providers face challenges due to a lack of standardized measures and clear guidance.
- Improving screening requires addressing systemic barriers and providing consistent protocols.
Background:
Developmental delays are common among children with sickle cell disease (SCD). Existing guidelines support consistent screening to increase the identification of deficits and support referral to rehabilitative interventions, yet adherence remains variable. This study sought to assess current practices and identify barriers and facilitators to improve developmental screening for children 0-3 years with SCD.
Procedure:
A mixed methods approach, guided by the Exploration and Preparation stages of the Exploration, Preparation, Implementation, and Sustainment (EPIS) framework, assessed developmental screening practices among primary care providers and hematologists. Phase 1 included the SCD Developmental Surveillance and Screening Guideline and Practice Survey. Phase 2 included the SCD Developmental Screening Organizational Survey alongside semi-structured interviews. Descriptive and qualitative methods summarized the findings.
Results:
Thirty-three providers from general pediatrics and hematology completed phase 1. Use of standardized developmental screening measures was variable, with the most frequently used being the Modified Checklist for Autism in Toddlers (77%) and the Ages and Stages Questionnaire (55%). Fifteen providers participated in phase 2, and reported they were most likely to engage in changes to improve their practice (mean = 4.4/5) and least likely to support spiritual health and well-being (mean = 3.5/5). Three themes emerged:(i) developmental screening is not standardized or specific to SCD, (ii) children with SCD benefit from a multidisciplinary team, and (iii) healthcare system limitations are a barrier.
Conclusions:
Developmental screening is inconsistent and insufficient for young children with SCD. Providers are interested in supporting children with SCD, but report a lack of standardized measures and consistent guidance as barriers.
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