Children with sickle cell disease (SCD) are living longer with the advent of medical advances such as prophylactic penicillin, chronic transfusion, and hydroxyurea. Despite greater longevity in SCD, the period following the transition from pediatric to adult care is critical; youth aged 18-30 years are at high risk for mortality and have high rates of healthcare utilization, leading to high healthcare costs. As such, health care transition (HCT) programs have been created to prepare patients for adult-centered care and subsequently, improve health outcomes. However, very few programs have been evaluated for effectiveness in achieving optimal health outcomes in SCD. This paucity of program evaluation is attributed to a lack of identifiable predictors and outcomes.
The aims of this proposal are to: 1) identify potential predictors of successful HCT through a survey of pediatric and adult SCD providers, 2) examine the associations between predictors of successful HCT and HCT outcomes in a cohort of youth with SCD (ages 16-20 years), and 3) identify and characterize trajectories of HCT over a 24-month period and determine predictors of these trajectories. The results of this project may have significant implications for the delivery of healthcare in SCD during the period of HCT. This study will contribute to the understanding of the predictors and outcomes of HCT among youth with SCD and the long-term goal of developing approaches to best evaluate HCT interventions and identify areas of improvement. This project will provide support for Dr. Porter to establish herself as an independent investigator with a research program in HCT in youth with SCD. The short-term goals of the project are to develop her skills in systematic assessment of HCT predictors and outcomes, assist her in learning and applying more advanced methodology to examine longitudinal HCT relationships, and expand her abilities to investigate, disseminate, and translate her work into effective interventions. The goals will be accomplished via mentorship by experts in the areas of SCD and HCT, participation in didactic activities, and the conduct of a research project focused on HCT in youth with SCD.

Public Health Relevance

Among youth with sickle cell disease (SCD), the period following transition from pediatric care to adult care is critical for optimal health. Transition programs have been developed to improve the health care transition (HCT) process but have not been formally evaluated. Understanding the predictors and outcomes for successful HCT will allow for improved ability to develop and evaluate future HCT interventions.

National Institute of Health (NIH)
National Heart, Lung, and Blood Institute (NHLBI)
Research Scientist Development Award - Research & Training (K01)
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Special Emphasis Panel (ZHL1)
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Werner, Ellen
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St. Jude Children's Research Hospital
United States
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Porter, Jerlym S; Wesley, Kimberly M; Zhao, Mimi S et al. (2017) Pediatric to Adult Care Transition: Perspectives of Young Adults With Sickle Cell Disease. J Pediatr Psychol 42:1016-1027