American Journal of Preventive Medicine
Volume 38, Issue 4, Supplement , Pages S528-S535 , April 2010

Health Status and Healthcare Use in a National Sample of Children with Sickle Cell Disease

  • Sheree L. Boulet, DrPH, MPH

      Affiliations

    • Division of Blood Disorders, National Center on Birth Defects and Developmental Disabilities, CDC, Atlanta, Georgia
    • Corresponding Author InformationAddress correspondence and reprint requests to: Sheree L. Boulet, DrPH, MPH, Division of Blood Disorders, National Center on Birth Defects and Developmental Disabilities, CDC, 1600 Clifton Road, MS-D02, Atlanta GA 30333
    • ,
  • Emad A. Yanni, MD

      Affiliations

    • Division of Global Migration and Quarantine Office of Workforce and Career Development, CDC, Atlanta, Georgia
    • ,
  • Melissa S. Creary, MPH

      Affiliations

    • Division of Blood Disorders, National Center on Birth Defects and Developmental Disabilities, CDC, Atlanta, Georgia
    • ,
  • Richard S. Olney, MD, MPH

      Affiliations

    • Division of Birth Defects and Developmental Disabilities, National Center on Birth Defects and Developmental Disabilities, CDC, Atlanta, Georgia

References 

  1. Bonds DR. Three decades of innovation in the management of sickle cell disease: the road to understanding the sickle cell disease clinical phenotype. Blood Rev. 2005;19:99–110
  2. American Academy of Pediatrics. Health supervision for children with sickle cell disease. Pediatrics. 2002;109:526–535
  3. Ashley-Koch A, Murphy C, Khoury MJ, Boyle CA. Contribution of sickle cell disease to the occurrence of developmental disabilities: a population-based study. Genet Med. 2001;3:181–186
  4. Schatz J, Finke RL, Kellett JM, Kramer JH. Cognitive functioning in children with sickle cell disease: a meta-analysis. J Pediatr Psychol. 2002;27:739–748
  5. Schatz J, Finke RL, Kellett JM, Kramer JH. Short-term memory in children with sickle cell disease: executive versus modality-specific processing deficits. Arch Clin Neuropsychol. 2005;20:1073–1085
  6. Schatz J, McClellan CB. Sickle cell disease as a neurodevelopmental disorder. Ment Retard Dev Disabil Res Rev. 2006;12:200–207
  7. Steen RG, Hu XJ, Elliott VE. Kindergarten readiness skills in children with sickle cell disease: evidence of early neurocognitive damage?. J Child Neurol. 2002;17:111–116
  8. Steen RG, Miles MA, Helton KJ, et al. Cognitive impairment in children with hemoglobin SS sickle cell disease: relationship to MR imaging findings and hematocrit. AJNR Am J Neuroradiol. 2003;24:382–389
  9. Downes SM, Hambleton IR, Chuang EL, Lois N, Serjeant GR, Bird AC. Incidence and natural history of proliferative sickle cell retinopathy: observations from a cohort study. Ophthalmology. 2005;112:1869–1875
  10. Friedman EM, Luban NLC, Herer GR, Williams I. Sickle cell anemia and hearing. Ann Otol Rhinol Laryngol. 1980;89:342–347
  11. Onakoya PA, Nwaorgu OG, Shokunbi WA. Sensorineural hearing loss in adults with sickle cell anaemia. Afr J Med Sci. 2002;31:21–24
  12. Serjeant GR. Sickle-cell disease. Lancet. 1997;350:725–730
  13. Talbot JF, Bird AC, Serjeant GR, Hayes RJ. Sickle cell retinopathy in young children in Jamaica. Br J Ophthalmol. 1982;66:149–154
  14. Talbot JF, Bird AC, Maude GH, Acheson RW, Moriarty BJ, Serjeant GR. Sickle cell retinopathy in Jamaican children: further observations from a cohort study. Br J Ophthalmol. 1988;72:727–732
  15. Day S, Chismark E. The cognitive and academic impact of sickle cell disease. J Sch Nurs. 2006;22:330–335
  16. Thompson RJ, Gustafson KE, Bonner MJ, Ware RE. Neurocognitive development of young children with sickle cell disease through three years of age. J Pediatr Psychol. 2002;27:235–244
  17. Raphael JL, Dietrich CL, Whitmire D, Mahoney DH, Mueller BU, Giardino AP. Healthcare utilization and expenditures for low income children with sickle cell disease. Pediatr Blood Cancer. 2009;52:263–267
  18. Shankar SM, Arbogast PG, Mitchel E, Cooper WO, Wang WC, Griffin MR. Medical care utilization and mortality in sickle cell disease: a population-based study. Am J Hematol. 2005;80:262–270
  19. Bilenker JH, Weller WE, Shaffer TJ, Dover GJ, Anderson GF. The costs of children with sickle cell anemia: preparing for managed care. J Pediatr Hematol Oncol. 1998;20:528–533
  20. Kauf TL, Coates TD, Huazhi L, Mody-Patel N, Hartzema AG. The cost of health care for children and adults with sickle cell disease. Am J Hematol. 2009;84:323–327
  21. Nietert PJ, Abboud MR, Zoller JS, Silverstein MD. Costs, charges, and reimbursements for persons with sickle cell disease. J Pediatr Hematol Oncol. 1999;21:389–396
  22. Botman SL, Moore TF, Moriarity CL, Parsons VL. Design and estimation for the National Health Interview Survey, 1995–2004. Vital Health Stat. 2000;2:
  23. Turnbull R, Turnbull A, Warren S, Eidelman S, Marchand P. Shakespeare redux, or Romeo and Juliet revisited: embedding a terminology and name change in a new agenda for the field of mental retardation. Ment Retard. 2002;40:65–70
  24. Boulet SL, Boyle CA, Schieve LA. Health care use and health and functional impact of developmental disabilities among U.S. children, 1997–2005. Arch Pediatr Adolesc Med. 2009;163:19–26
  25. van Dyck PC, Kogan MD, McPherson MG, Weissman GR, Newacheck PW. Prevalence and characteristics of children with special health care needs. Arch Pediatr Adolesc Med. 2004;158:884–890
  26. Schenker N, Raghunathan TE, Chiu P, Makuc DM, Zhang G, Cohen AJ. Multiple imputation of family income and personal earnings in the National Health Interview Survey: methods and examples. Hyattsville MD: National Center for Health Statistics; 1980;
  27. Miller JE, Gaboda D, Davis D. Early childhood chronic illness: comparability of maternal reports and medical records. Vital Health Stat. 2001;2:1–10
  28. Steen RG, Fineberg-Buchner C, Hankins G, Weiss L, Prifitera A, Mulhern RK. Cognitive deficits in children with sickle cell disease. J Child Neurol. 2005;20:102–107
  29. Armstrong FD, Thompson RJ, Wang W, et al. Cognitive functioning and brain magnetic resonance imaging in children with sickle cell disease (Neuropsychology Committee of the Cooperative Study of Sickle Cell Disease). Pediatrics. 1996;97:864–870
  30. Wang W, Enos L, Gallagher D, et al. Neuropsychologic performance in school-aged children with sickle cell disease: a report from the Cooperative Study of Sickle Cell Disease. J Pediatr. 2001;139:391–397
  31. Schatz J, White DA, Moinuddin A, Armstrong M, DeBaun MR. Lesion burden and cognitive morbidity in children with sickle cell disease. J Child Neurol. 2002;17:891–895
  32. Emerson GG, Lutty GA. Effects of sickle cell disease on the eye: clinical features and treatment. Hematol Oncol Clin North Am. 2005;19:957–973
  33. Newacheck PW, McManus M, Fox HB, Hung Y-Y, Halfon N. Access to health care for children with special health care needs. Pediatrics. 2000;105:760–766
  34. Fox HB, Newacheck PW. Private health insurance of chronically ill children. Pediatrics. 1990;85:50–57
  35. McManus M, Flint S, Kelly R. The adequacy of physician reimbursement for pediatric care under Medicaid. Pediatrics. 1991;87:909–920
  36. Fox HB, Wicks LB, Newacheck PW. Health maintenance organizations and children with special health needs (A suitable match?). Am J Dis Child. 1993;147:546–552
  37. Noll RB, McKellop JM, Vannatta K, Kalinyak K. Child-rearing practices of primary caregivers of children with sickle cell disease: the perspective of professionals and caregivers. J Pediatr Psychol. 1998;23:131–140
  38. Larson K, Halfon N. Family income gradients in the health and health care access of U.S. children. Matern Child Health J. 2009 Jun 5;[Epub ahead of print]
  39. Haque A, Telfair J. Socioeconomic distress and health status: the urban–rural dichotomy of services utilization for people with sickle cell disorder in North Carolina. J Rural Health. 2000;16:43–55
  40. Farber MD, Koshy M, Kinney TR Cooperative Study of Sickle Cell Disease. Cooperative study of sickle cell disease: demographic and socioeconomic characteristics of patients and families with sickle cell disease. J Chron Dis. 1985;38:495–505
  41. Jabine TB. Reporting chronic conditions in the National Health Interview Survey (A review of findings from evaluation studies and methodological test). Vital Health Stat. 1987;2:1–45
  42. Souza-Vazirani D, Minkovitz CS, Strobino DM. Validity of maternal report of acute health care use for children younger than 3 years. Arch Pediatr Adolesc Med. 2005;159:167–172
  43. Daly KA, Lindgren B, Giebink GS. Validity of parental report of a child's medical history in otitis media research. Am J Epidemiol. 1994;139:1116–1121
  44. Ngui EM, Flores G. Satisfaction with care and ease of using health care services among parents of children with special health care needs: the roles of race/ethnicity, insurance, language, and adequacy of family-centered care. Pediatrics. 2006;117:1184–1196
  45. U.S. Census BureauDeNavas-Walt C, Proctor BD, Lee CH. Current population reports, P60–229, income, poverty, and health insurance coverage in the U.S.: 2004. Washington DC: U.S. Government Printing Office; 2005;
  46. Ievers-Landis CE, Brown RT, Drotar D, Bunke V, Lambert RG, Walker AA. Situational analysis of parenting problems for caregivers of children with sickle cell syndromes. J Dev Behav Pediatr. 2001;22:169–178
  47. Evans GW. The environment of childhood poverty. American Psychologist. 2004;59:77–92

PII: S0749-3797(10)00004-8

doi: 10.1016/j.amepre.2010.01.003

American Journal of Preventive Medicine
Volume 38, Issue 4, Supplement , Pages S528-S535 , April 2010

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