Hemoglobinopathy learning collaborative: Using quality improvement (QI) to achieve equity in health care quality, coordination, and outcomes for sickle cell disease

Journal of Health Care for the Poor and Underserved

Volumn 23, Issue 3 SUPPL, 2012, Pages 34-48

  Oyeku, Suzette O ^a   Jason Wang, C ^b   Scoville, Richard ^c   Vanderkruik, Rachel ^d   Clermont, Emily ^d   McPherson, Marianne E ^d   Adams, William G ^e   Homer, Charles J ^f  

^a ALBERT EINSTEIN COLLEGE OF MEDICINE   (United States)

^b STANFORD UNIVERSITY   (United States)

^c CINCINNATI CHILDREN'S HOSPITAL MEDICAL CENTER   (United States)

^d NICHQ ^*  (United States)

^e BOSTON UNIVERSITY SCHOOL OF MEDICINE   (United States)

^f HARVARD MEDICAL SCHOOL   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

COOPERATION; HEALTH CARE DISPARITY; HEALTH CARE QUALITY; HEMOGLOBINOPATHY; HUMAN; NOTE; ORGANIZATION AND MANAGEMENT; SICKLE CELL ANEMIA; TOTAL QUALITY MANAGEMENT; TREATMENT OUTCOME; UNITED STATES;

ANEMIA, SICKLE CELL; COOPERATIVE BEHAVIOR; HEALTHCARE DISPARITIES; HEMOGLOBINOPATHIES; HUMANS; QUALITY ASSURANCE, HEALTH CARE; QUALITY IMPROVEMENT; TREATMENT OUTCOME; UNITED STATES;

EID: 84864692568     PISSN: 10492089     EISSN: 15486869     Source Type: Journal    
DOI: None     Document Type: Note

References (42)

1. Brousseau DC, Panepinto JA, Nimmer M, et al. The number of people with sickle cell disease in the United States: national and state estimates. Am J Hematol. 2010 Jan;85(1):77-78.
2. Agency for Healthcare Research and Quality. Welcome to HCUPnet: Healthcare Cost and Utilization Project (HCUP). Rockville, MD: Agency for Healthcare Research and Quality, 2012. Available at: http://hcupnet.ahrq.gov/.
3. Davis H, Moore RM Jr, Gergen PJ. Cost of hospitalizations associated with sickle cell disease in the United States. Public Health Rep. 1997 Jan-Feb;112(1):40-43.
4. Panepinto JA. Health-related quality of life in sickle cell disease. Pediatr Blood Cancer. 2008 Jul;51(1):5-9.
5. Steiner CA, Miller JL. Sickle cell disease patients in U.S. hospitals, 2004. In: Healthcare Cost and Utilization Project Statistical Briefs. Rockville, MD: Agency for Healthcare Research and Quality, 2006.
6. Davis H, Schoendorf KC, Gergen PJ, et al. National trends in the mortality of children with sickle cell disease, 1968 through 1992. Am J Public Health. 1997 Aug;87(8): 1317-1322.
7. Davis H, Gergen PJ, Moore RM Jr. Geographic diferences in mortality of young children with sickle cell disease in the United States. Public Health Rep. 1997 Jan-Feb;112(1):52-58.
8. Quinn CT, Rogers ZR, Buchanan GR. Survival of children with sickle cell disease. Blood. 2004 Jun 1;103(11):4023-4027.
9. Charache S, Terrin ML, Moore RD, et al. Efect of hydroxyurea on the frequency of painful crises in sickle cell anemia. Investigators of the Multicenter Study of Hydroxy-urea in Sickle Cell Anemia. N Engl J Med. 1995 May 18;332(20):1317-1322.
10. Hoppe C, Vichinsky E, Quirolo K, et al. Use of hydroxyurea in children ages 2 to 5 years with sickle cell disease. J Pediatr Hematol Oncology. 2000 Jul-Aug;22(4):330-334.
11. Letvin NL, Linch DC, Beardsley G P, et al. Augmentation of fetal-hemoglobin production in anemic monkeys by hydroxyurea. N Engl J Med. 1984 Apr 5;310(14):869-873.
12. Platt O, Orkin S, Dover G, et al. Hydroxyurea enhances fetal hemoglobin production in sickle cell anemia. J Clin Invest. 1984 Aug;74(2):652-656.
13. Steinberg MH, Barton F, Castro O, et al. Effect of hydroxyurea on mortality and morbidity in adult sickle cell anemia: risks and benefits up to 9 years of treatment. JAMA. 2003 Apr 2;289(13):1645-1651.
14. Zimmerman SA, Schultz WH, Davis JS, et al. Sustained long-term hematologic efficacy of hydroxyurea at maximum tolerated dose in children with sickle cell disease. Blood. 2004 Mar 15;103(6):2039-2045.
15. Brawley OW, Cornelius LJ, Edwards LR, et al. National Institutes of Health Consensus Development Conference statement: hydroxyurea treatment for sickle cell disease. Ann Intern Med. 2008 Jun 17;148(12):932-938.
16. Ritho J, Liu H, Hartzema AG, et al. Hydroxyurea use in patients with sickle cell disease in a Medicaid population. Am J Hematol. 2011 Oct;86(10):888-890.
17. National Heart, Lung and Blood Institute. The management of sickle cell disease. (NIH Pub. no. 02-2117.) Bethesda, MD: National Institutes of Health; National Heart, Lung, and Blood Institute, 2002. Available at: http://www.nhlbi.nih.gov/health/prof/blood/sickle/sc_mngt.pdf.
18. Warren MD, Arbogast PG, Dudley JA, et al. Adherence to prophylactic antibiotic guidelines among Medicaid infants with sickle cell disease. Arch Pediatr Adolesc Med. 2010 Mar;164(3):298-299.
19. Sox CM, Cooper WO, Koepsell TD, et al. Provision of pneumococcal prophylaxis for publicly insured children with sickle cell disease. JAMA. 2003 Aug;290(8):1057-1061.
20. Tanabe P, Myers R, Zosel A, et al. Emergency department management of acute pain episodes in sickle cell disease. Acad Emerg Med. 2007 May;14(5):419-425.
21. Silbergleit R, Jancis MO, McNamara RM. Management of sickle cell pain crisis in the emergency department at teaching hospitals. J Emerg Med. 1999 Jul-Aug;17(4):625-630.
22. Shapiro BS, Benjamin LJ, Payne R, et al. Sickle cell-related pain: perceptions of medical practitioners. J Pain Symptom Manage. 1997 Sep;14(3):168-174.
23. Brousseau DC, Mukonje T, Brandow AM, et al. Dissatisfaction with hospital care for children with sickle cell disease not due only to race and chronic disease. Pediatr Blood Cancer. 2009 Aug;53(2):174-178.
24. McPherson M, Taniel L, Minniti C P. Transition of patients with sickle cell disease from pediatric to adult care: assessing patient readiness. Pediatr Blood Cancer. 2009 Jul;52(7):838-841.
25. Brousseau DC, Owens PL, Mosso AL, et al. Acute care utilization and rehospitaliza-tions for sickle cell disease. JAMA. 2010 Apr 7;303(13):1288-1294.
26. Hemker BG, Brousseau DC, Yan K, et al. When children with sickle-cell disease become adults: lack of outpatient care leads to increased use of the emergency department. Am J Hematol. 2011 Oct;86(10):863-865.
27. Treadwell M, Telfair J, Gibson RW, et al. Transition from pediatric to adult care in sickle cell disease: establishing evidence-based practice and directions for research. Am J Hematol. 2011 Jan;86(1):116-120.
28. Sobota A, Neufeld EJ, Sprinz P, et al. Transition from pediatric to adult care for sickle cell disease: results of a survey of pediatric providers. Am J Hematol. 2011 Jun;86(6):512-515.
29. Smith LA, Oyeku SO, Homer C, et al. Sickle cell disease: a question of equity and quality. Pediatrics. 2006 May;117(5):1763-1770.
30. National Institutes of Health. New directions for sickle cell therapy in the genome era conference summary. Bethesda, MD: National Institutes of Health, 2003. Available at: http://www.genome.gov/Pages/About/NACHGR/2004NACHGRAgenda/TabRSickleCellConferenceSummary.pdf
31. 107th Congress of the United States of America. Departments of Labor, Health and Human Services, and Education and Related Agencies Appropriation Act, 2002 (Bill no. H.R. 3061.RH). Washington, DC: 107th Congress of the United States of America, 2002. Available at: http://www.gpo.gov/fdsys/pkg/BILLS-107hr3061rh/pdf/BILLS-107hr3061rh.pdf.
32. 108th Congress of the United States of America. American Jobs Creation Act of 2004 (Bill no. H.R. 4520). Washington, DC: 108th Congress of the United States of America, 2004. Available at: http://thomas.loc.gov/cgi-bin/bdquery/z?d108:H.R.4520.
33. U.S. Department of Health and Human Services. Report to Congress: national strategy for quality improvement in health care. Washington, DC: U.S. Department of Health and Human Services, 2011. Available at: http://www.healthcare.gov/law/resources/reports/quality03212011a.html.
34. Kilo CM. Improving care through collaboration. Pediatrics. 1999 Jan;103(1 Suppl E): 384-393.
35. Institute for Healthcare Improvement. The breakthrough series: IHI's collaborative model for achieving breakthrough improvement. Boston, MA: Institute for Healthcare Improvement, 2003.
36. Wagner EH, Glasgow RE, Davis C, et al. Quality improvement in chronic illness care: a collaborative approach. Jt Comm J Qual Improv. 2001 Feb;27(2):63-80.
37. Langley GJ, Nolan KM, Norman CL, et al. The improvement guide: a practical approach to enhancing organizational performance. San Francisco, CA: Jossey-Bass, 1996.
38. Wang CJ, Kavanagh PL, Little AA, et al. Quality-of-care indicators for children with sickle cell disease. Pediatrics. 2011 Sep;128(3):484-493.
39. Kavanagh PL, Sprinz PG, Vinci SR, et al. Management of children with sickle cell disease: a comprehensive review of the literature. Pediatrics. 2011 Dec;128(6):e1552-e1574.
40. Federal Register. Paperwork Reduction Act (44 U.S.C. 3501 et seq.). College Park, MD: U.S. National Archives and Records Administration, 1995.
41. 111th Congress of the United States of America. The Patient Protection and Aford-able Care Act (H.R. 3590). Washington, DC: 111th Congress of the United States of America, 2010. Available at: http://www.gpo.gov/fdsys/pkg/BILLS-111hr3590enr/pdf/BILLS-111hr3590enr.pdf.
42. Berkowitz SA, Miller ED. Accountable care at academic medical centers-lessons from Johns Hopkins. N Engl J Med. 2011 Feb 17;364(7):e12.