ArticlePediatric blood & cancer2024
"Everyone screens to some extent": Barriers and facilitators of developmental screening among children with sickle cell disease: A mixed methods study.
Article in Pediatric blood & cancer, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 5 papers.
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Who cites it
5 citing papers in PubMed.
- Associations Between Sickle Cell Disease, Pica, and Enuresis in Pediatric Neurodevelopmental Disorders.Medical sciences (Basel, Switzerland) · 2026Article
- Barriers to sickle cell disease care: a biopsychosocial analysis mapped to the standards of care guidelines by the sickle pan African research consortium.Journal of public health (Oxford, England) · 2026Article
- Low depression rates among caregivers of young children with sickle cell disease: a rapid report.Journal of sickle cell disease · 2026Article
- Early Intervention as a Way of Reducing Neurocognitive Delay in Pediatric Sickle Cell Patients.Cureus · 2025Review
- Perinatal risk factors and neurocognitive outcomes in children and adolescents with sickle cell disease.Pediatric blood & cancer · 2024Article
Corrections and comments
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Authors and funding
10 authors.
Funding
Abstract
backgroundDevelopmental 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.
resultsThirty-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.
conclusionsDevelopmental 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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