1. Academic Challenges and School Service Utilization in Children with Sickle Cell Disease.
- Author
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Karkoska KA, Haber K, Elam M, Strong S, and McGann PT
- Subjects
- Adolescent, Child, Child, Preschool, Educational Status, Female, Humans, Infant, Male, Retrospective Studies, Risk Assessment, Anemia, Sickle Cell therapy, Facilities and Services Utilization statistics & numerical data, School Health Services statistics & numerical data
- Abstract
Objectives: To describe the academic concerns and risk strata of children with sickle cell disease (SCD) as identified through a parent-directed screening tool and to compare the rates of these concerns with actual school service utilization in the clinic population., Study Design: We completed a retrospective review of patients with SCD referred to the school intervention program during the 2017-2018 and 2018-2019 school years because of a school-related concern raised by parents or noted by the clinical team. All parents completed the Brief School Needs Inventory (BSNI), a validated parent-response tool used to stratify academic risk. Rates of special education services, grade retention, and results from neuropsychologic testing were captured. Clinical history, the use of disease-modifying therapy, and results from laboratory and neuroimaging studies were also obtained. Descriptive statistics were performed to examine demographic information, clinical history, and BSNI results., Results: In total, 137 unique patients (age range, 14 months to 19 years) completed the BSNI during the study period, for 181 events. According to BSNI risk-stratification, 45% of patients were deemed low, 36% moderate, and 19% high academic risk. Over one-half of parents were concerned about their ability to advocate for their child's needs. Despite legal qualification for a Section 504 accommodation plan, only 20% had established plans. Academic concerns were common with 31% of children reporting an individualized education program and 20% with grade retention/remediation., Conclusions: Concerns for academic challenges remain high among parents of children with SCD; however, school service utilization remains disproportionately low attributable to numerous reasons., (Copyright © 2020 Elsevier Inc. All rights reserved.)
- Published
- 2021
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