n TRANSITIONING FROM PEDIATRIC TO ADULT CARE When your child becomes an adult (usually at age 18), they may have to move from pediatric to adult hematology care. This can be a challenging and difficult process. You and your adolescent or young adult may experience fear and anxiety during this time. However, this should be viewed as a natural process, like a graduation. Poor transition to adult care has been linked to a decrease in health quality, increased emergency room visits, and increased hospitalizations and healthcare costs. Successful transition has been linked to better health outcomes and better quality of life. Check to see if your child’s hospital has a transition program. Transitioning should include developing skills and knowledge to not only move to an adult hematology provider but to learn how to self-manage sickle cell disease. Work with your hematology team to help your adolescent or young adult develop self-management skills and be adequately prepared to transition to adult hematology care when it’s time. n ONLINE RESOURCES Centers for Disease Control and Prevention; Tips for Supporting Students with Sickle Cell Disease https://www.cdc.gov/ncbddd/sicklecell/documents/tipsheet_supporting_students_with_scd.pdf KidsHealth for Parents—Sickle Cell Disease http://kidshealth.org/parent/medical/heart/sickle_cell_anemia.html National Heart, Lung, and Blood Institute; National Institutes of Health—Sickle Cell Disease www.nhlbi.nih.gov/health/dci/Diseases/Sca/SCA_WhatIs.html Center of Parent Information & Resources; Parent Training and Information Center www.parentcenterhub.org/find-your-center Sickle Cell Disease Association of America, Inc. www.sicklecelldisease.org The Sickle Cell Information Center www.scinfo.org Be the Match; Sickle Cell Disease (SCD) https://bethematch.org/patients-and-families/about-transplant/blood-cancers-and- diseases-treated-by-transplant/sickle-cell-disease--scd-/ Website URLs correct and active as of July 2020. n REFERENCES ADAKVEO website. The power of protection against pain crisis with ADAKVEO. Retrieved from https://www.us.adakveo.com/ sickle-cell-disease/ Chen, E., Cole, S. W., & Kato, P. M. (2004). A review of empirically supported psychosocial interventions for pain and adherence outcomes in sickle cell disease. Journal of Pediatric Psychology, 29 (3), 197–209. Colombatti, R., Maschietto, N., Varotto, E., Grison, A., Grazzina, N., Meneghello, L., … Sainati, L. (2010). Pulmonary hypertension in sickle cell children under 10 years of age. British Journal of Haemotology , 150 (5), 601–609.
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