Exploring Adult Care Experiences and Barriers to Transition in Adult Patients with Sickle Cell Disease
Halanych, J. H2, Howard,T. H1, Hilliard, L. M1, Lebensburger, J. D1
Affiliation
1 Pediatric Hematology Oncology, University of Alabama, Birmingham, Alabama,USA
2Department of Medicine, Division of Preventive Medicine, University of Alabama, Birmingham, Alabama, USA
Corresponding Author
Bemrich-Stolz, C. J., Department of Pediatrics, University of Alabama, Birmingham, USA. E-mail: cbstolz@peds.uab.edu
Citation
Bemrich-Stolz, C. J., et al. Exploring Adult Care Experiences and Barriers to Transition in Adult Patients with Sickle Cell Disease. (2015). Int J Hematol and Therap 1(1): 1-5.
Copy rights
© 2015 Bemrich-Stolz, C. J. This is an Open access article distributed under the terms of Creative Commons Attribution 4.0 International License.
Keywords
Abstract
Background: Young adults with sickle cell anemia are at high risk for increased hospitalization and death at the time of transition to adult care. This may be related to failure of the transition system to prepare young adults for the adult healthcare system. This qualitative study was designed to identify factors related to transition that may affect the health of adults with sickle cell anemia.
Procedure: Ten patients currently treated in an adult hematology clinic participated in semi-structured qualitative interviews to describe their experience transitioning from pediatric to adult care and differences in adult and pediatric healthcare systems.
Results: Participants were generally unprepared for the adult healthcare system. Negative issues experienced by participants included physician mistrust, difficulty with employers, keeping insurance, and stress in personal relationships. Positive issues experienced by participants included improved self efficiency with improved self care and autonomy.
Conclusions: In the absence of a formalized transition program, adults with sickle cell anemia experience significant barriers to adult care. In addition to medical history review and identification of an adult provider, transition programs should incorporate strategies to navigate the adult medical system, insurance and relationships as well as encouraging self efficiency.
