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The Impact of Poverty and Sickle Cell Disease on the Education of Children

The Impact of Poverty and Sickle Cell Disease on the Education of Children. Allison King, MD, MPH Program in Occupational Therapy Pediatric Hematology and Oncology June 11, 2008. Population. Most common genetic disease identified in the newborn period 1 of 2,200 American infants

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The Impact of Poverty and Sickle Cell Disease on the Education of Children

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  1. The Impact of Poverty and Sickle Cell Disease on the Education of Children Allison King, MD, MPH Program in Occupational Therapy Pediatric Hematology and Oncology June 11, 2008

  2. Population • Most common genetic disease identified in the newborn period • 1 of 2,200 American infants • 1 of 400 African-American infants • 75,000 people with SCD in the US • > 400 patients with SCD @ SLCH • 80% of SCD patients are on Medicaid

  3. S ickle Cells Fragile Short Survival (15-20 days vs. 120 days) Rigid and inflexible Chronic hemolysis - increased bilirubin Can become stuck and form plugs in small blood vessels

  4. Complications of SCD • Chronic anemia • Pain episodes (lasting for hours, days, to weeks) • Life threatening lung disease • Increased risk for infections • Stroke (overt and silent)

  5. Description – What is the prevalence? Mechanism – Why is this happening? Intervention – How can we improve? Educational Attainment in Children with SCD

  6. Cognitive Test Scores in Children with SCD with Overt strokes, Silent Cerebral Infarcts and Normal MRIs Pediatrics. 1996;97: 864-870

  7. Gradient in Global IQ Overt Stroke < Silent Strokes < No Silent Stroke

  8. Cerebral Infarcts • Frontal lobe lesions • Attention (directing and maintaining) • Memory • Diffuse lesions (frontal and parietal) • Visual-spatial • Attention • Memory Memory and attention deficits associated with poorer reading, writing and math

  9. Neurocognitive Evaluation of 19 Children with Silent Cerebral Infarcts Schatz J, Brown RT, Pascual JM, Hsu L, DeBaun MR. Neurology 2001;56:1109-1111

  10. Academics of Children with SCD and Cerebral Infarcts • Study of children with silent infarcts • 14/19 (74%) retained a grade or required special educational services • 7/19 (37%) with poor academic achievement in either reading or math • > 1.5 SD below mean Schatz J, Brown RT, Pascual JM, Hsu L, DeBaun MR. Neurology 2001;56:1109-1111

  11. Cognitive Deficits Exist Even Without Infarcts (n = 45) Schatz J, Brown RT, Pascual JM, Hsu L, DeBaun MR. Neurology 2001;56:1109-1111

  12. Students With Academic Problems 74% (14 of 19) students with silent strokes had a history of being retained or required special services due to academic difficulties 27% (12 of 45) students without silent strokes had academic difficulties 6% (1 of 18) siblings without sickle cell disease had academic difficulties

  13. Students with SCD and infarcts (N = 23) 20% graduated from high school in four years Average FS IQ 75 (past failure) vs. 93 (no failure), p = .002 Our Experience at SLCH King, et al. J of School Health, 2006

  14. Hypotheses Targeted memory strategy rehabilitation will have a greater improvement in • memory skills and • academic achievement of children with SCD, cerebral infarcts, and memory deficits than in the same group of children who receive general tutoring

  15. Demographics • 5 male, 6 female • Mean age: 11.6 yrs (range 8 – 16) • Mean FSIQ: 90 (range 57 – 116) • 7 overt, 4 silent • 9 completed the program Two year feasibility program with goal of 10 students

  16. Tutoring Memory Strategies Improvement by both groups in working memory as measured by Numbers Backward exam, p=0.04. King et al, Neurology, 2007

  17. Tutoring Memory Strategies Improvement in reading achievement in both groups, p=0.046. King et al, Neurology 2007.

  18. Factors Associated With Cognition and Academic Achievement Without SCD • Mother’s highest level of education • Marital status of primary caregiver • Family’s annual income • Number of people living in the home • Gender With SCD Academic achievement • Cerebral infarct • Hematocrit Cognition

  19. SES Affects Cognition • Cross-sectional study • Children with SCD (N = 50) • Cognitive testing completed • Annual income recorded • Education levels of parents obtained

  20. Background:SES Affects Cognition Schatz et al, J Dev Behav Pediatr 2004

  21. Hypothesis • SES status has a greater impact on academic attainment than the presence of cerebral infarcts

  22. Results:Low SES and Gender Are Associated With Grade Retention • Cross-sectional study at SLCH • N = 112 students with SCD • 29% had failed a grade in past • Risk of grade failure • Medicaid insurance (80% of cohort) • OR 14.4 (95% CI 1.9, 111.1) • Boys • OR 2.6 (95% CI 1.1, 6.2) • Infarcts were not statistically significant

  23. Multi-Center Evaluation24 sites • Clinical trial to determine the efficacy of blood transfusion therapy as a treatment for preventing silent infarcts in children with SCA • Will screen ~1800 children with SS or Sb-thal0 for silent infarcts • Will randomize ~200 children for transfusion or observation

  24. Hypothesis • In students with sickle cell anemia, a lower SES will result in a lower educational attainment than students with a higher SES

  25. Demographics • n = 447 students • Average grade in school = 3rd • Range of grades = K through 8th • 34% have infarcts • n = 410 students with MRI • Mean household income = $41,600 • Mean # of individuals in home = 4.5

  26. Preliminary Results

  27. Grade Failure Associations by Annual Income

  28. What Issues Can We Tackle? • Cognitive deficits? • Targeted rehabilitation in progress • What is associated with living in poverty? • Styles of parenting • Behavior • Can interventions be developed to alter these things?

  29. Cognition in Children with Sickle Cell Anemia COCCA • Prospective cohort • SS or S-bthal0 • Students 6-16 years of age • MRI without infarct in past 24 months • Mothers willing to participate

  30. Hypotheses • Among children with SCA without cerebral infarcts, SES is a major determinant in academic achievement • Maternal depression is associated with child cognitive impairments in childrenwith SCA without cerebral infarcts

  31. Cognitive testing Study entry 1.5 years later Hematocrit Academic records SES Caregiver’s education level Caregiver marital status Annual income Persons in home Health insurance (Medicaid, private, none) Measures

  32. Measures • Center for Epidemiologic Studies – Depression Scale (CES-D) • CES-D administered to mothers of children in cognitive testing • Other maternal functioning screens • Rosenberg Self-Esteem Scale • Mirowsky and Ross ControlScale • Harter Competency Scale • Other measures of chaos, parenting, neighborhood/community

  33. Preliminary Data(N = 49) • 26% of students have failed a grade • 28% have IEP • 7% have 504 Plan • 21% of mothers screen depressive

  34. Preliminary Associations • Maternal depressive symptoms • Lower level of maternal education • Government assistance • Child depressive symptoms • Less supportive parenting

  35. Preliminary AssociationsParenting Style vs. Child Behavior • Maternal Involvement/Emotional Support • Increased child adaptive skills • Increased child leadership • Less child externalizing • Less child aggression

  36. Preliminary AssociationsParenting vs. Child Cognition • Harsh parenting • Lower scores on executive function • Consistent home routine • Higher scores on executive function • Ongoing conflict between parent and child • Lower scores on executive function

  37. Future Directions • Parent As Teachers is a viable intervention for this high risk population • Randomized Trial • Children with limited financial resource will be benefit from PARENTS AS TEACHERS program PLUS preschool program • Versus children with limited resources who only receive preschool program • Both groups receive preschool program for at least two years Zigler , et al. J of Primary Prevention, 2007, 29,103-120

  38. Summary of Overall Strategy to Improve Educational Attainment Observation: Children with SCD fail grades often What factors are associated with failure? Infarcts – cognitive deficits Cognitive deficits without infarcts Low SES - Medicaid What is it about Medicaid? Income Education of caregiver Psychological state of caregiver How can we intervene? Memory remediation Multidisciplinary team support Identify other risk factors that may improve educational attainment

  39. Acknowledgements • King/DeBaun Lab • Sickle Cell Disease Team • Kim Ferguson MSW, Teri Lindsey, PNP, Cindy Terrill CRA • SLCH Sickle Cell Stroke Research Team • Michael Noetzel- Neurology • Bob McKinstry-Neuroradiology • Desiree White- Neuropsychology • Gene Brody – U of GA Psychology • American Heart Association • Doris Duke Charitable Foundation • NHLBI • NINDS – SITT Executive Council and Sites

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