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Sickle Cell Disease: Lessons Learned

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Abstract

There is a national focus on transition from pediatric to adult healthcare. We propose a framework to guide researchers, clinicians, healthcare administrators, and policymakers in developing transition research agendas to systematically move toward dissemination and implementation of empirically supported transition programs. Our framework organizes the process of transition research activities into three phases: (1) pre-program development, (2) program development and evaluation, and (3) program dissemination and implementation. We then apply the framework to critically evaluate the current state of the literature on transition from pediatric to adult healthcare for individuals with SCD, the most common inherited red blood cell disorder in the world. Our review indicated that the majority of activities have focused on pre-program development but that there are critical gaps in the evaluation, dissemination, and implementation of transition programs for this population. Based on our findings, we presented the next steps for moving research on transition programs for individuals with SCD forward and discussed lessons learned that can be applied to other fields developing and implementing research agendas related to transition.

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Authors and Affiliations

  1. Department of Psychology and Biobehavioral Sciences, St. Jude Children’s Research Hospital, Memphis, TN, USA

    Jerlym S. Porter

  2. Department of Psychology, Virginia Commonwealth University, Richmond, VA, USA

    Cecelia Valrie & Jelaina Shipman

  3. Pediatrics Department, Boston Children’s Hospital, Boston, MA, USA

    Adrienne S. Viola

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  1. Jerlym S. Porter
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  2. Cecelia Valrie
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  3. Adrienne S. Viola
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  4. Jelaina Shipman
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Correspondence to Jerlym S. Porter .

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Editors and Affiliations

  1. Department of Medicine, Baylor College of Medicine, Houston, TX, USA

    Amir Sharafkhaneh

  2. University of Missouri School of Medicine, Department of Child Health and the Child Health Research Institute, Columbia, MO, USA

    David Gozal

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Porter, J.S., Valrie, C., Viola, A.S., Shipman, J. (2023). Sickle Cell Disease: Lessons Learned. In: Sharafkhaneh, A., Gozal, D. (eds) Sleep Medicine. Springer, Cham. https://doi.org/10.1007/978-3-031-30010-3_16

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