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Updated: Aug 15, 2025

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Individual-level behavioral interventions to support optimal development of children with sickle cell disease: A
Catherine R Hoyt1,2,3, Sadie Hurwitz1, Taniya E Varughese1
1Program in Occupational Therapy, Washington University School of Medicine, St. Louis, Missouri, USA.
Insights
Behavioral interventions for children with sickle cell disease (SCD) show promise, particularly for disease knowledge, self-management, and pain management. More research is needed for very young children and developmental impacts.
Area of Science:
- Pediatric Hematology
- Behavioral Science
- Public Health
Background:
- Sickle cell disease (SCD) is a genetic blood disorder requiring comprehensive management strategies.
- Individual-level behavioral interventions are crucial for improving health outcomes in pediatric SCD patients.
- A systematic review is needed to synthesize existing evidence on these interventions.
Approach:
- This review followed PRISMA guidelines for systematic reviews.
- Twenty-seven studies investigating behavioral interventions for children (0-18 years) with SCD were included.
- Interventions were categorized into six types: disease knowledge, self-management, pain management, school functioning, cognitive health, and mental health.
Key Points:
- Six intervention types were identified, with disease knowledge and self-management having the most studies (n=7 each).
- Pain management and school functioning interventions were also represented (n=4 each).
- Most interventions focused on older children (5+ years), with limited research for infants and toddlers (0-3 years).
Conclusions:
- Behavioral interventions focusing on disease knowledge, self-management, and pain management appear beneficial for children with SCD.
- There is a significant gap in research regarding interventions for very young children (0-3 years) with SCD.
- Further investigation is required to understand the impact of SCD on child development and to develop targeted interventions for all age groups.
Abstract:
This review aimed to identify and describe individual-level behavioral interventions for children 0-18 years of age with sickle cell disease (SCD). PRISMA guidelines were followed at each stage of this review. Twenty-seven studies were included, representing six intervention types: disease knowledge (n = 7), self-management (n = 7), pain management (n = 4), school functioning (n = 4), cognitive health (n = 4), and mental health (n = 2). Most interventions targeted older children (5+ years), while only two examined interventions for children 0-3 years. This review suggests that offering education about disease knowledge, self-management, and pain management interventions can be beneficial for this population. Future research is needed to understand interventions to support young children and the impact of SCD on development.
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