Sharfun Ara and Collette M. Brown. Experiences and Perceptions on Transitioning from Pediatric to Adult Care Among Patients with Sickle Cell Disease in an NYC Hospital.
. 2021; 9(5):222-228. doi: 10.12691/AJPHR-9-5-6
Sickle Cell Disease, transition process, experiences, perceptions, young adult patient, pediatric physician
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[1] | Centers for Disease Control and Prevention (CDC). “Sickle cell disease in Georgia.” (n.d.). Available: http://www.cdc.gov/ncbddd/sicklecell/documents/scd_in_ga_prov.pdf. |
|
[2] | Serjeant, G. R., “The natural history of sickle cell disease” Cold Spring Harb Perspect Med, 3, a011783, 2013. |
|
[3] | Lee, L., Askew, R., Walker, J., Stephen, J. & Robertson-Artwork, A., “Adults with sickle cell disease: An interdisciplinary approach to home care and self-care management with a case study” Home Healthcare Nurse, 30(3), 172-183, 2012. |
|
[4] | National Heart, Lung, and Blood Institute. (2012). What is sickle cell anemia? 2012. Available: http://www.nhlbi.nih.gov/health/health-topics/topics/sca. |
|
[5] | Rees, D. C., Williams, T. N., & Gladwin, M. T., “Sickle-cell disease,” Lancet, 376, 2018-2031, 2010. |
|
[6] | Ballas, S.K., Lieff S., Benjamin, L.J., Dampier, C.D., Heeney, M.M., Hoppe, C., Johnson, C.S., Rogers, Z.R., Smith-Whitey, K., Wang, W.C., Telen, M.J., “Definitions of the phenotypic manifestations of sickle cell disease,” American Journal of Hematology, 85(1), 6-13, 2010. |
|
[7] | Treadwell, M., Schrier, S., & Tirnauer, J., “Transition from pediatric to adult care: sickle cell disease,” Up to Date,1-32, 2018. |
|
[8] | Piel, F. B., Hay, S. I., Gupta, S., Weatherall, D. J., Williams, T. N., “Global burden of sickle cell anemia in children under five, 2010-2050: Modeling based on demographics, excess mortality, and interventions,” PLoS Medicine, 10(7), e1001484, 2013. |
|
[9] | Centers for Disease Control and Prevention (CDC). Sickle cell disease (SCD): Data and statistics. 2019. [Online]. Available: http://www.cdc.gov/ncbddd/sicklecell/data.html. |
|
[10] | Loiselle, K., Lee, J. L., Szulczewski, L., Drake, S., Crosby, L. E., & Pai, A. L., “Systematic and meta-analytic review: medication adherence among pediatric patients with sickle cell disease” Journal of Pediatric Psychology, 41(4), 406-418, 2015. |
|
[11] | Adams-Graves, P. & Bronte-Jordan, L., “Recent treatment guidelines for managing adult patients with sickle cell disease: challenges in access to care, social issues, and adherence,” Expert Review of Hematology, 9(6), 541-552, 2016. |
|
[12] | Quinn, C. T., “Sickle cell disease in childhood: from newborn screening through transition to adult medical care” Pediatric Clinics of North America, 60(6), 1363-1381, 2013. |
|
[13] | Ilesanmi, O. O., “Gender differences in SCD crises: implications for genetic counselling and psychotherapy,” International Journal of Information and Education Technology, 4(2), 215, 2014. |
|
[14] | Lughetti, L., Bigi, E., & Venturelli, D., “Novel insights in the management of sickle cell disease in childhood” World Journal of Clinical Pediatrics, 5(1), 25-34, 2016. |
|
[15] | Association of Maternal and Child Health Programs, “Using the six core elements of health care transition in Medicaid managed care,” Available: http://www.amchp.org/programsandtopics/BestPractices/InnovationStation/ISDocs/Got%20Transition.pdf. |
|
[16] | Got Transition, “The six core elements of health care transition,” 2021. Available: https://www.gottransition.org/six-core-elements/. |
|
[17] | Smith, W. R., Sisler, I. Y., Johnson, S., Lipato, T. J., Newlin, J. S., Owens, Z. S., Morgan, A. M., Treadwell, M. J., & Polak, K. (2019). Lessons Learned from Building a Pediatric-to-Adult Sickle Cell Transition Program. Southern medical journal, 112(3), 190-197. |
|
[18] | Saulsberry, A.C., Porter, J. S., and Hankins, J., “A program of transition to adult care for sickle cell disease,” American Society of Hematology, 2019(1), 496-504, 2019. |
|
[19] | Cerns, S., McCracken, C., Rich, C., “Optimizing adolescent transition to adult care for sickle cell disease,” Medical Surgical Nursing, 22(4), 255-258, 2013. |
|
[20] | Treadwell, M., Telfair, J., Gibson, R. W., 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, 86(1), 116, 2011. |
|
[21] | Sonneveld, H. M., Starting, M. M. H., van Staa, A. & Nieboer, A. P., “Gaps in transitional care: What are the perceptions of adolescents, parents and providers?” Child Care Health and Development, 39(1), 69-80, 2013. |
|
[22] | O’Connor, S., Hanes, D., Lindsey, A., Weiss, M., Petty, L. & Overcash, J., “Attitudes among healthcare providers and patients diagnosed with sickle cell disease: frequent hospitalizations and stressors,” Clinical Journal of Oncology Nursing, 18(6), 675-680, 2014. |
|
[23] | Higginson, A., Forgeron, P., Dick, B., & Harrison, D., “Moving on: A survey of Canadian nurses’ self-reported transition practices for young people with chronic pain” Canadian Journal of Pain, 2(1), 169-181, 2018. |
|
[24] | Porter, J. S., Wesley, K. M., Zhao, M. S., Rupff, R. J., & Hankins, J. S., “Pediatric to adult care transition: perspectives of young adults with sickle cell disease,” Journal of Pediatric Psychology, 42(9), 1016-1027, 2017. |
|
[25] | Sobota, A., Neufeld, E. J., Sprinz, P., & Heeney, M. M., “Transition from pediatric to adult care for sickle cell disease: results of a survey of pediatric providers” American Journal of Hematology, 86(6), 512, 2011. |
|
[26] | Feliu, M. H., Wellington, C., Crawford, R. D., Wood, M., Edwards, L. Byrd, G., & Edwards, C. L., “Opioid “management and dependency among adult patients with sickle cell disease” Hemoglobin, 35(5-6), 485-494, 2011. |
|
[27] | Centers for Disease Control and Prevention (CDC), “Sickle Cell Disease: Taking charge of your health and healthcare,” 2020. Available: https://www.cdc.gov/ncbddd/sicklecell/features/sickle-cell-transition.html |
|
[28] | Van Staa, A., Jedeloo, S., Van Meeteren J., & Latour J. M., “Crossing the transition chasm: experiences and recommendations for improving transitional care of young adults, parents, and providers” Child Care Health and Development, 37(6), 821-832, 2011. |
|