Year-end Sale % OFF 
Abstract
ObjectiveThis qualitative study sought to learn from young adults with sickle cell disease (SCD) about their experience leaving pediatric care and perspective on what makes a successful transition.MethodsFifteen young adults with SCD who had left pediatric care within the previous five years participated in focus groups led by a trained moderator. Transcripts were analyzed using grounded theory.ResultsFour main themes emerged from the analysis: facilitators of transition (meeting the adult provider prior to transfer, knowing what to expect, gradually taking over disease self-management and starting the process early), barriers to transition (negative perceived attitude of adult staff, lack of SCD specific knowledge by both patients and staff, and competing priorities interfering with transition preparation), what young adults wished for in a transition program (opportunities to meet more staff prior to transfer, more information about the differences between pediatric and adult care, learning from a peer who has been through the process, more SCD teaching, and flexibility in transition preparation) and how they define a successful transition (gradually assuming responsibility for self-management of their SCD).ConclusionOur findings present unique opportunities to learn from young adults with SCD about ways to improve current transition programs.
Highlights
Sickle cell disease (SCD) is an inherited blood disorder affecting approximately 100,000 people in the US, mainly those of African American descent [1]
Our findings present unique opportunities to learn from young adults with SCD about ways to improve current transition programs
We sought to learn from young adults with SCD who had recently transferred from pediatric to adult care about their experience, what had helped them in the transition process and what they saw as a successful transition in order to improve transition preparation and outcomes in this high risk population
Summary
Sickle cell disease (SCD) is an inherited blood disorder affecting approximately 100,000 people in the US, mainly those of African American descent [1] Improved medical care, such as widespread use of penicillin prophylaxis and pneumococcal vaccination, have led to a decline in childhood mortality in SCD [2]. These patients are facing the need to transition to adult care. We sought to learn from young adults with SCD who had recently transferred from pediatric to adult care about their experience, what had helped them in the transition process and what they saw as a successful transition in order to improve transition preparation and outcomes in this high risk population
Sign-in/Register to view highlights & summary Talk to us
Join us for a 30 min session where you can share your feedback and ask us any queries you have
Schedule a callDisclaimer: All third-party content on this website/platform is and will remain the property of their respective owners and is provided on "as is" basis without any warranties, express or implied. Use of third-party content does not indicate any affiliation, sponsorship with or endorsement by them. Any references to third-party content is to identify the corresponding services and shall be considered fair use under The CopyrightLaw.
