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Inadequate Recognition of Education Resources Required for High-Risk Students With Sickle Cell Disease

Sonya Herron, MSSW, LCSW; Stephen J. Bacak, MPH; Allison King, MD; Michael R. DeBaun, MD, MPH
Arch Pediatr Adolesc Med. 2003;157(1):104. doi:10.1001/archpedi.157.1.104.
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Students with chronic illness, such as sickle cell disease (SCD), diabetes mellitus, cancer, or asthma are at risk for poor academic attainment. Students aged 5 through 19 years with SCD have an additional burden, as this disease is associated with multiple painful episodes resulting in hospitalizations and strokes.1

In 1997, we reviewed the status of 17-, 18-, and 19-year-olds with SCD followed up by the Hematology/Oncology Center at St Louis Children's Hospital (St Louis, Mo). Only 4 (15%) of 26 patients were on target to completing high school. Given the poor education attainment, we expected that most of these students would have received educational support and/or had Individual Education Plans (IEP)2 to which they were entitled through the Individuals with Disabilities Education Act.3 The poor high school graduation rate for these young adults prompted us to consider the adequacy of educational support for students with SCD who are considered to be at increased risk for poor academic attainment, defined as those with strokes or multiple painful episodes requiring hospitalization in a 12-month period. As a result of the initial survey, we systematically assessed the academic performance, school attendance, and availability of IEPs for students with SCD believed to be at high risk for academic difficulties.

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