References
1. Wolfson JA, Schrager SM, Coates TD, Kipke MD. Sickle-cell disease in California: A population-based description of emergency department utilization. Pediatric Blood & Cancer. 2011;56(3):413-419.
2. CDC Sickle Cell Disease home page - data and statistics - last accessed 2-18-2020. https://www.cdc.gov/ncbddd/sicklecell/data.html
3. Wojciechowski EA, Hurtig A, Dorn L. A natural history study of adolescents and young adults with sickle cell disease as they transfer to adult care: A need for case management services. Journal of Pediatric Nursing. 2002;17(1):18-27.
4. Yanni E, Grosse SD, Yang Q, Olney RS. Trends in Pediatric Sickle Cell Disease-Related Mortality in the United States, 1983-2002. The Journal of Pediatrics. 2009;154(4):541-545.
5. Elmariah H, Garrett ME, De Castro LM, et al. Factors associated with survival in a contemporary adult sickle cell disease cohort.American Journal of Hematology. 2014;89(5):530-535.
6. 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. American Journal of Hematology.2005;80(4):262-270.
7. Quinn CT, Rogers ZR, McCavit TL, Buchanan GR. Improved survival of children and adolescents with sickle cell disease. Blood.2010;115(17):3447-3452.
8. Lanzkron S, Sawicki GS, Hassell KL, Konstan MW, Liem RI, McColley SA. Transition to adulthood and adult health care for patients with sickle cell disease or cystic fibrosis: Current practices and research priorities. Journal of Clinical and Translational Science.2018;2(5):334-342.
9. Mainous AG, Rooks B, Tanner RJ, Carek PJ, Black V, Coates TD. Shared Care for Adults with Sickle Cell Disease: An Analysis of Care from Eight Health Systems. Journal of Clinical Medicine. 2019;8(8):1154.
10. Mainous AG, Tanner RJ, Harle CA, Baker R, Shokar NK, Hulihan MM. Attitudes toward Management of Sickle Cell Disease and Its Complications: A National Survey of Academic Family Physicians.Anemia. 2015;2015:1-6.
11. Debaun MR, Telfair J. Transition and Sickle Cell Disease.Pediatrics. 2012;130(5):926-935.
12. Treadwell M, Telfair J, Gibson RW, Johnson S, Osunkwo I. Transition from pediatric to adult care in sickle cell disease: Establishing evidence-based practice and directions for research. American Journal of Hematology. 2011;86(1):116-120.
13. Aisiku IP, Penberthy LT, Smith WR, et al. Patient satisfaction in specialized versus nonspecialized adult sickle cell care centers: the PiSCES study. J Natl Med Assoc. 2007;99(8):886-890.
14. Wolfson JA, Schrager SM, Khanna R, Coates TD, Kipke MD. Sickle cell disease in California: Sociodemographic predictors of emergency department utilization. Pediatric Blood & Cancer.2012;58(1):66-73.
15. Brousseau DC. Acute Care Utilization and Rehospitalizations for Sickle Cell Disease. JAMA. 2010;303(13):1288.
16. Jordan L, Swerdlow P, Coates TD. Systematic review of transition from adolescent to adult care in patients with sickle cell disease.J Pediatr Hematol Oncol. 2013;35(3):165-169.
17. McPherson M, Thaniel L, Minniti CP. Transition of patients with sickle cell disease from pediatric to adult care: Assessing patient readiness. Pediatric Blood & Cancer. 2009;52(7):838-841.
18. Wang CJ, Kavanagh PL, Little AA, Holliman JB, Sprinz PG. Quality-of-Care Indicators for Children With Sickle Cell Disease.Pediatrics 2011;128(3):484-493.
19. Sobota AE, Shah N, Mack JW. Development of quality indicators for transition from pediatric to adult care in sickle cell disease: A modified Delphi survey of adult providers. Pediatric Blood & Cancer. 2017;64(6):e26374.
20. Anderson LA, Dedrick RF. Development of the trust in physician scale: a measure to assess interpersonal trust in patient-physician relationships Psychol Rep. 1990;67(3 Pt 2):1091-1100.
21. Marshall GN and Hays R.D. The patient satisfaction questionnaire short form (PSQ-18). Santa Monica, CA: RAND Corporation;1994.
22. Thayaparan AJ, Mahdi E. The Patient Satisfaction Questionnaire Short Form (PSQ-18) as an adaptable, reliable, and validated tool for use in various settings. Medical Education Online. 2013;18(1):21747.
23. Lunyera J, Jonassaint C, Jonassaint J, Shah N. Attitudes of Primary Care Physicians Toward Sickle Cell Disease Care, Guidelines, and Comanaging Hydroxyurea With a Specialist. Journal of Primary Care & Community Health. 2017;8(1):37-40.
24. Whiteman LN, Haywood C, Jr., Lanzkron S, Strouse JJ, Feldman L, Stewart RW. Primary Care Providers’ Comfort Levels in Caring for Patients with Sickle Cell Disease. South Med J.2015;108(9):531-536.
25. Lanzkron S, Little J, Field J, et al. Increased acute care utilization in a prospective cohort of adults with sickle cell disease.Blood Advances. 2018;2(18):2412-2417.
26. Sobota A, Umeh E, Mack J. Young Adult Perspectives on a Successful Transition from Pediatric to Adult Care in Sickle Cell Disease.Journal of Hematology Research. 2016;2(1):17-24.
27. Haywood C, Lanzkron S, Bediako S, et al. Perceived Discrimination, Patient Trust, and Adherence to Medical Recommendations Among Persons with Sickle Cell Disease. Journal of General Internal Medicine.2014;29(12):1657-1662.
28. Porter JS, Wesley KM, Zhao MS, Rupff RJ, Hankins JS. Pediatric to Adult Care Transition: Perspectives of Young Adults With Sickle Cell Disease. Journal of Pediatric Psychology. 2017;42(9):1016-1027.
29. Puri Singh A, Haywood C, Beach MC, et al. Improving Emergency Providers’ Attitudes Toward Sickle Cell Patients in Pain. Journal of Pain and Symptom Management. 2016;51(3):628-632.e623.
30. Shankar SM, Arbogast PG, Mitchel E, Ding H, Wang WC, Griffin MR. Impact of proximity to comprehensive sickle cell center on utilization of healthcare services among children with sickle cell disease.Pediatric Blood & Cancer. 2008;50(1):66-71.
31. Blinder MA, Duh MS, Sasane M, Trahey A, Paley C, Vekeman F. Age-Related Emergency Department Reliance in Patients with Sickle Cell Disease. The Journal of Emergency Medicine.2015;49(4):513-522.e511.
32. Hemker BG, Brousseau DC, Yan K, Hoffmann RG, Panepinto JA. When children with sickle-cell disease become adults: Lack of outpatient care leads to increased use of the emergency department. American Journal of Hematology. 2011;86(10):863-865.
33. Okpala I, Thomas V, Westerdale N, et al. The comprehensive care of sickle cell disease. European Journal of Haematology.2002;68(3):157-162.
34. Cronin RM, Hankins JS, Byrd J, et al. Risk factors for hospitalizations and readmissions among individuals with sickle cell disease: results of a U.S. survey study. Hematology.2019;24(1):189-198.
35. Blinder MA, Vekeman F, Sasane M, Trahey A, Paley C, Duh MS. Age-related treatment patterns in sickle cell disease patients and the associated sickle cell complications and healthcare costs.Pediatric Blood & Cancer. 2013;60(5):828-835.
36. Thom DH, Ribisl KM, Stewart AL, Luke DA. Further validation and reliability testing of the Trust in Physician Scale. The Stanford Trust Study Physicians. Med Care. 1999;37(5):510-517.
37. Hankins JS, Osarogiagbon R, Adams-Graves P, et al. A Transition Pilot Program for Adolescents With Sickle Cell Disease. Journal of Pediatric Health Care. 2012;26(6):e45-e49.