Transition Position Paper

REFERENCES

American Academy of Pediatrics, American Academy of Family Physicians, & American College of Physicians, Transitions Clinical Report Authoring Group. (2011, 2015). Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics, 128 (1), 182–200. https://doi.org/10.1542/peds.2011-0969. Reaffirmed, August 2015. https://pediatrics.aappublications.org/ content/pediatrics/136/5/e1418.full.pdf American Society of Hematology. (2021). Pediatric to adult hematologic care transition. https://www.hematology.org/education/clinicians/ clinical-priorities/pediatric-to-adult-care-transition Blinder, M. A., Vekeman, F., Sasane, M., Trahey, A., Paley, C., & Duh, M. S. (2013). Age-related treatment patterns in sickle cell disease patients and the associated sickle cell complications and healthcare costs. Pediatric Blood and Cancer , 60 (5), 828–835. https://doi.org/10.1002/pbc.24459 Bloom, S. R., Kuhlthau, K., Van Cleave, J., Knapp, A. A., Newacheck, P., & Perrin, J. M. (2012). Health care transition for youth with special health care needs. Journal of Adolescent Health, 51 (3), 213–219. https://doi.org/10.1016/j.jadohealth.2012.01.007 Castillo, C., & Kitsos, E. (2017). Transitions from pediatric to adult care. Global Pediatric Health, 4, 2333794X1774494. https://doi. org/10.1177/2333794x17744946 Crosby, L. E., Quinn, C. T., & Kalinyak, K. A. (2015). A biopsychosocial model for the management of patients with sickle-cell disease transitioning to adult medical care. Advances in Therapy, 32 (4), 293–305. https://doi.org/10.1007/s12325-015-0197-1 Daly, B., Kral, M. C., & Tarazi, R. A. (2011). The role of neuropsychological evaluation in pediatric sickle cell disease. Clinical Neuropsychologist , 25 (6), 903–925. https://doi.org/10.1080/13854046.2011.560190 DeBaun, M. R., & Telfair, J. (2012). Transition and sickle cell disease. Pediatrics, 130 (5), 926–935. https://doi.org/10.1542/peds.2011-3049 Fegran, L., Hall, E. O. C., Uhrenfeldt, L., Aagaard, H., & Ludvigsen, M. S. (2014). Adolescents’ and young adults’ transition experiences when transferring from paediatric to adult care: A qualitative metasynthesis. International Journal of Nursing Studies, 51 (1), 123–135. https://doi.org/10.1016/j.ijnurstu.2013.02.001 Got Transition. (2020). Overview: Transitioning youth to an adult health care clinician. https://www.gottransition.org/6ce/?leaving-overview Hankins, J. S., Osarogiagbon, R., Adams-Graves, P., McHugh, L., Steele, V., Smeltzer, M. P., & Anderson, S. M. (2012). A transition pilot program for adolescents with sickle cell disease. Journal of Pediatric Health Care, 26 (6), e45–e49. https://doi.org/10.1016/j. pedhc.2012.06.004 Hassell, K. L. (2010). Population estimates of sickle cell disease in the U.S. American Journal of Preventive Medicine, 38 (4), S512–S521. https://doi.org/10.1016/j.amepre.2009.12.022 Hemker, B. G., Brousseau, D. C., Yan, K., Hoffmann, R. G., & Panepinto, J. A. (2011). When children with sickle-cell disease become adults: Lack of outpatient care leads to increased use of the emergency department. American Journal of Hematology, 86 (10), 863–865. https://doi.org/10.1002/ajh.22106

Jordan, L., Swerdlow, P., & Coates, T. D. (2013). Systematic review of transition from adolescent to adult care in patients with sickle cell disease. Journal of Pediatric Hematology/Oncology , 35 (3), 165–169. https://doi.org/10.1097/mph.0b013e3182847483 Kanter, J., Smith, W. R., Desai, P. C., Treadwell, M., Andemariam, B., Little, J., Nugent, D., Claster, S., Manwani, D. G., Baker, J., Strouse, J. J., Osunkwo, I., Stewart, R. S., King, A., Shook, L. M., Roberts, J. D., & Lanzkron, S. (2020). Building access to care in adult sickle cell disease: Defining models of care, essential components, and economic aspects. Blood Advances , 4 (16), 3804–3813. https://doi. org/10.1182/bloodadvances.2020001743 Lanzkron, S., Carroll, C. P., & Haywood, C., Jr. (2013). Mortality rates and age at death from sickle cell disease: U.S., 1979– 2005. Public Health Reports , 128 (2), 110–116. https://doi. org/10.1177/003335491312800206 Lebensburger, J., Bemrich-Stolz, C., & Howard, T. (2012). Barriers in transition from pediatrics to adult medicine in sickle cell anemia. Journal of Blood Medicine , 3 , 105–112. https://doi.org/10.2147/jbm. s32588 Lebensburger, J., Halanych, J. H., Howard, T. H., & Hilliard, L. M. (2015). Exploring adult care experiences and barriers to transition in adult patients with sickle cell disease. International Journal of Hematology and Therapy , 1 (1), 1–5. https://doi.org/10.15436/2381- 1404.15.003 Mahan, J. D., Betz, C. L., Okumura, M. J., & Ferris, M. E. (2017). Self- management and transition to adult health care in adolescents and young adults: A team process. Pediatrics in Review , 38 (7), 305–319. https://doi.org/10.1542/pir.2016-0074 McManus, M., White, P., Schmidt, A., Slade, R., Salus, T., & Bradley, J. (2021). 2021 coding and payment tip sheet for transition from pediatric to adult health care . https://www.gottransition.org/ resource/?2021-coding-tip-sheet National Heart, Lung, and Blood Institute. (2014a). Evidence-based management of sickle cell disease: Expert panel report, 2014. U.S. Department of Health and Human Services, National Institutes of Health. nhlbi.nih.gov/sites/default/files/media/docs/sickle-cell- disease-report%20020816_0.pdf National Heart, Lung, and Blood Institute. (2014b). Evidence-based management of sickle cell disease—Expert panel report, 2014: Guide to recommendations . U.S. Department of Health and Human Services, National Institutes of Health. nhlbi.nih.gov/sites/default/ files/media/docs/Evd-Bsd_SickleCellDis_Rep2014.pdf Porter, J. S., Graff, J., Lopez, A. D., & Hankins, J. S. (2014). Transition from pediatric to adult care in sickle cell disease: Perspectives on the family role. Journal of Pediatric Nursing , 29 (2), 158–167. https:// doi.org/10.1016/j.pedn.2013.10.002 Quinn, C. T., Rogers, Z. R., McCavit, T. L., & Buchanan, G. R. (2010). Improved survival of children and adolescents with sickle cell disease. Blood , 115 (17), 3447–3452. https://doi.org/10.1182/ blood-2009-07-233700