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Evaluation of a community-based organization’s transition program for sickle cell disease and its effect on adolescents’ and young adults’ transition readiness

Mazzei, Emily (2018) Evaluation of a community-based organization’s transition program for sickle cell disease and its effect on adolescents’ and young adults’ transition readiness. Master's Thesis, University of Pittsburgh. (Unpublished)

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Background: The need for transition care for adolescent and young adults (AYA) with sickle cell disease (SCD) has become evident in recent years, as AYA with SCD are living longer lives due to the successful implementation of preventative treatment measures. This study seeks to evaluate the current SCD transition program of a community-based organization (CBO) in Pittsburgh, as well as to conduct interviews with CBO staff/volunteers and health care professionals in order to assess the current state of the program and any barriers that are present to the transition process.
Methods: AYA completed two self-administered surveys, one regarding their experience with the CBO’s transition program, and one assessing their transition readiness. Interviews were conducted with CBO staff/volunteers and health care professionals, which were analyzed using thematic analysis.
Results: No statistically significant change in readiness was observed in the AYA study population before and after participation in the CBO transition program. Interviews revealed five main themes: Parental Encouragement of Autonomy, Negative Feelings of AYA Affecting Transition, Presentation of Transition to AYA, Variability Regarding AYA Readiness to Transition, and Logistical Barriers to Transition.
Conclusions: AYA readiness did not significantly change based on the transition program. This study was the first to evaluate a CBO’s transition program. The results of the surveys and interviews can help inform CBO staff/volunteers as well as health care professionals about the needs of the local AYA population regarding transition. This can also allow suggested changes to be implemented and any identified barriers to be addressed.
Public Health Significance: This study is designed to impact public health by assessing the current transition program in Pittsburgh and suggesting policy changes in order to help improve the process of transition for AYA with SCD in the community.


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Item Type: University of Pittsburgh ETD
Status: Unpublished
CreatorsEmailPitt UsernameORCID
Mazzei, Emilyemm182@pitt.eduemm182
ETD Committee:
TitleMemberEmail AddressPitt UsernameORCID
Committee ChairHillery,
Committee MemberDurst,
Committee MemberGrubs,
Committee MemberMatheo,
Date: 17 September 2018
Date Type: Publication
Defense Date: 5 June 2018
Approval Date: 17 September 2018
Submission Date: 4 June 2018
Access Restriction: No restriction; Release the ETD for access worldwide immediately.
Number of Pages: 131
Institution: University of Pittsburgh
Schools and Programs: School of Public Health > Genetic Counseling
School of Public Health > Public Health Genetics
Degree: MS - Master of Science
Thesis Type: Master's Thesis
Refereed: Yes
Uncontrolled Keywords: sickle cell disease and transition
Date Deposited: 17 Sep 2018 20:27
Last Modified: 18 Sep 2018 20:10


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