Improve education, improve lives

An individual’s level of education is a strong determinant of their health, occupational success as an adult, and ultimately, long-term happiness. Sickle cell disease (SCD) has a direct influence on patients’ ability to obtain education. Especially among children with SCD, the chronic pain, unpredictable episodes and frequent absences due to hospitalizations, doctor visits or home pain management, puts these students at risk for low educational attainment.[1-5] Each school year, one out of every three children or adolescents living with SCD will miss at least one month of classes.[1] In addition, these children frequently experience deficiencies in school readiness[6] or cerebrovascular impairments—cognitive impairment—that may also limit their potential.[7, 8] Although many living with SCD have experienced some type of stroke or silent cerebral infarcts in their history, even those students who have no cerebrovascular events often show cognitive deficit or require special education.[7, 9] Given the importance of education in the general population, it would seem that significant attention would be given to ensuring underserved patients with SCD are successful in school. Unfortunately, this is not the case.

The early identification of students with SCD at risk for school failure is currently inadequate, and when these students are identified, they are not receiving the appropriate educational resources and support from their teachers and school administration.[9-11] Although the frequently negative school experiences of young people living with SCD and the lack of adequate accommodations for these students is well-documented,[12] there are only two studies examining academic or school-based interventions for students with SCD. The first, a randomized, controlled study showed that providing education about SCD and its management to the student with SCD, their teachers and peers significantly decreased SCD related school absences.[13] In contrast, the second, a prospective cohort study found that a school-based program to increase individualized education plans development and educational resources (e.g. tutoring) for children with SCD and cerebral infarcts did not improve absenteeism or academic performance over 2-years of follow-up.[7] However, unlike the first study, the second study did not provide education or engage the student’s teachers or school administration. Specific components of school-based interventions for students with SCD may be necessary for them to be effective. Disclosure to teachers and peers of someone’s SCD status alone may worsen the student’s school experience[14] but combining this information with education about SCD and its management may prove to elicit the appropriate teacher and peer support that students with SCD need to be successful. School-based educational programs have shown to improve academic outcomes among low-income minority students without SCD.[15] Whether these programs are effective in children with SCD needs to be tested, as does whether improving educational achievement improves health outcomes, occupational success and overall quality of life. We may find that improving educational outcomes translates into happier lives.


1.         Schwartz, L.A., J. Radcliffe, and L.P. Barakat, Associates of school absenteeism in adolescents with sickle cell disease. Pediatric Blood & Cancer, 2009. 52(1): p. 92-96.

2.         Wang, W., et al., Neuropsychologic performance in school-aged children with sickle cell disease: A report from the Cooperative Study of Sickle Cell Disease. Journal of Pediatrics, 2001. 139(3): p. 391-397.

3.         Day, S. and E. Chismark, The cognitive and academic impact of sickle cell disease. The Journal of School Nursing, 2006. 22(6): p. 330-5.

4.         Taras, H. and W. Potts-Datema, Chronic health conditions and student performance at school. The Journal of School Health, 2005. 75(7): p. 255-266.

5.         van Heesch, M.M., et al., Hospital admissions and school dropout: a retrospective cohort study of the ‘selection hypothesis’. European Journal of Public Health, 2012. 22(4): p. 550-5.

6.         Chua-Lim, C., et al., Deficiencies in school readiness skills of children with sickle cell anemia: a preliminary report. Southern Medical Journal, 1993. 86(4): p. 397-402.

7.         King, A., et al., A multidisciplinary health care team’s efforts to improve educational attainment in children with sickle-cell anemia and cerebral infarcts. The Journal of School Health, 2006. 76(1): p. 33-37.

8.         Schatz, J., et al., Poor school and cognitive functioning with silent cerebral infarcts and sickle cell disease. Neurology, 2001. 56(8): p. 1109-1111.

9.         Herron, S., et al., Inadequate recognition of education resources required for high-risk students with sickle cell disease. Archives of Pediatrics & Adolescent Medicine, 2003. 157(1): p. 104.

10.       Mayes, S., et al., Psychoeducational Screening in Pediatric Sickle Cell Disease: An Evaluation of Academic and Health Concerns in the School Environment. Childrens Health Care, 2011. 40(2): p. 101-115.

11.       Dyson, S.M., et al., Disclosure and sickle cell disorder: a mixed methods study of the young person with sickle cell at school. Social Science and Medicine, 2010. 70(12): p. 2036-44.

12.       Dyson, S.M., et al., The eduational experiences of young people with sickle cell disorder: a commentary on the existing literature. Disability & Society, 2007. 22(6): p. 581-594.

13.       Koontz, K., et al., A randomized, controlled pilot trial of a school intervention for children with sickle cell anemia. J Pediatr Psychol, 2004. 29(1): p. 7-17.

14.       Dyson, S.M., et al., Sickle cell, habitual dys-positions and fragile dispositions: young people with sickle cell at school. Sociology of Health and Illness, 2011. 33(3): p. 465-83.

15.       Muennig, P., et al., Effects of a prekindergarten educational intervention on adult health: 37-year follow-up results of a randomized controlled trial. American Journal of Public Health, 2009. 99(8): p. 1431-7.

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