References
- Ballas SK, Lieff S, Benjamin LJ, et al. Definitions of the phenotypic manifestations of sickle cell disease. Am J Hematol. 2010;85:6–13.
- Steinberg MH. In the clinic: sickle cell disease. Ann Int Med. 2011;155:ITC31–15.
- Wang CJ, Kavanagh PL, Little AA, Holliman JG, Sprinz PG. Quality-of-care indicators for children with sickle cell disease. Pediatrics. 2011;128:484–493.
- Centers for Disease Control and Prevention. Sickle cell disease (SCD): facts about SCD. Available at: www.cdc.gov/ncbddd/sicklecell/facts.html. Published 2014. Accessed December 16, 2014.
- Quinn CT, Rogers ZR, McCavit TL, Buchanan GR. Improved survival of children and adolescents with sickle cell disease. Blood. 2010;115:3447–3452.
- Rothman RL, Yin HS, Mulvaney S, Co JP, Homer C, Lannon C. Health literacy and quality: focus on chronic illness care and patient safety. Pediatrics. 2009;124:S315–S326.
- Nielson-Bohlman L, Panzer A, Kindig D, eds. Health Literacy: A Prescription to End Confusion. Washington, DC: Institute of Medicine, National Academies Press; 2004.
- Baker DW. The meaning and the measure of health literacy. J Gen Intern Med. 2006;21:878–883.
- Berkman ND, Davis TC, McCormack L. Health literacy: what is it? J Health Commun. 2010;15:9–19.
- Nutbeam D. The evolving concept of health literacy. Soc Sci Med. 2008;67:2072–2078.
- Schonlau M, Martin L, Haas A, Derose KP, Rud R. Patient's literacy skills: more than just reading ability. J Health Commun. 2011;16:1046–1054.
- Abrams MA, Klass P, Dreyer BP. Health literacy and children: introduction. Pediatrics. 2009;124(3 Suppl):S262–S264.
- Sanders LM, Federico S, Klass P, Abrams MA, Dreyer B. Literacy and child health. Arch Ped Adol Med. 2009;163:131–140.
- DeWalt DA, Hink A. Health literacy and child health outcomes: a systematic review of the literature. Pediatrics. 2009;124(3 Suppl):S265–S274.
- Yin HS, Johnson M, Mendelsohn AL, Abrams MA, Sanders LM, Dreyer BP. The health literacy of parents in the United States: a nationally representative study. Pediatrics. 2009;124(3 Suppl):S289–S298.
- Baker DW, Williams MV, Parker RM, Gazmararian JA, Nurss J. Development of a brief test to measure functional health literacy. Patient Educ Couns. 1999;38:33–42.
- Kandula NR, Nsiah-Kumi PA, Makoul G, et al. The relationship between health literacy and knowledge improvement after a multimedia type 2 diabetes education program. Patient Educ Couns. 2009;75:321–327.
- Aguirre AC, Ebrahim N, Shea JA. Performance of the English and Spanish S-TOFHLA among publicly insured Medicaid and Medicare patients. Patient Educ Couns. 2005;56:332–339.
- Sanders LM, Thompson VT, Wilkinson JD. Caregiver health literacy and the use of child health services. Pediatrics. 2007;119:e86–e92.
- Wolf MS, Wilson EAH, Rap DN, et al. Literacy and learning in health care. Pediatrics. 2009;124(3 Suppl):S275–S281.
- Bodenheimer T, Lorig K, Holman H, Grumbach K. Patient self-management of chronic disease in primary care. JAMA. 2002;288:2469–2475.
- Acharya K, Lang CW, Ross LF. A pilot study to explore knowledge, attitudes, and beliefs about sickle cell trait and disease. J Natl Med Assoc. 2009;101:1163–1172.
- Boyd JH, Watkins AR, Price CL, et al. Inadequate community knowledge about sickle cell disease among African-American women. J Natl Med Assoc. 2005;97:62–67.
- Gustafson SL, Gettig EA, Watt-Morse M, et al. Health beliefs among African American women regarding genetic testing and counseling for sickle cell disease. Genet Med. 2007;9:303–310.
- Treadwell MJ, McClough L, Vinchinsky E. Using qualitative and quantitative strategies to evaluate knowledge and perceptions about sickle cell disease and trait. J Natl Med Assoc. 2006;98:704–710.
- Kladny B, Gettig EA, Krisknamurti L. Systematic follow-up and case management of the abnormal newborn screen can improve acceptance of genetic counseling for sickle cell and other hemoglobinopathy trait. Genet Med. 2005;7:139–142.
- Shook L, Crosby LE, Atweh GF. Health literacy and sickle cell disease: an assessment of adolescents, young adults and caregivers. Blood. 2013;122(21):Abstract 2251.
- Carden MA, Sisler I, Newlin J, Smith W, Godder K. Disease-specific knowledge assessment is a better predictor of health care utilization than caregiver functional health literacy among children with sickle cell disease. Blood. 2012;120(21):Abstract 4240.
- Channing Bete Company. Learn about sickle cell disease and sickle cell trait [brochure]. South Deerfield, MA: Channing Bete Company; 2009.
- Pines JM, Asplin BR, Kaji AH, et al. Frequent users of emergency department services: gaps in knowledge and a proposed research agenda. Acad Emerg Med. 2011;18:e64–e69.
- Hunt KA, Weber EJ, Showstack JA, Colby DC, Callaham ML. Characteristics of frequent users of emergency departments. Ann Emerg Med. 2006;48:1–8.
- Aisiku IP, Smith WR, McClish DK, et al. Comparisons of high versus low emergency department utilizers in sickle cell disease. Ann Emerg Med. 2009;53:587–593.
- Kroner EL, Hoffmann RG, Brousseau DC. Emergency department reliance: a discriminatory measure of frequent emergency department users. Pediatrics. 2010;125:133–138.
- DeWalt DA, Dilling MH, Rosenthal MS, Pignone MP. Low parental literacy is associated with worse asthma care measures in children. Ambul Pediatr. 2007;7:25–31.
- Morrison AK, Myrvik MP, Brousseau DC, Hoffmann RG, Stanley RM. The relationship between parent health literacy and pediatric emergency department utilization: a systematic review. Acad Pediatr. 2013;13:421–429.
- Turner T, Cull WL, Bayldon B, et al. Pediatricians and health literacy: descriptive results from a national survey. Pediatrics. 2009;124(3 Suppl):S299–S305.