Mortality in sickle cell disease (SCD) has shifted away from childhood and to young adulthood, with patients facing an increased risk of early mortality after leaving pediatric care. Lack of transition preparation and poor support for the development of self-management skills play a significant role in the adverse transition outcomes in this vulnerable population. It is therefore imperative to develop novel methods of self-management support to prepare adolescents with SCD to manage their own health prior to leaving pediatric care. Problem solving, a key component of many chronic disease self-management programs, helps individuals overcome barriers to self-management. This makes problem solving an appealing intervention for adolescents with SCD who face myriad social challenges associated with race and poverty while being expected to learn how to manage a complicated chronic disease. This proposal describes a four year integrated research and education plan to tailor and pilot-test an existing problem solving intervention developed by my primary mentors to improve self-management and transition readiness in adolescents with SCD. My specific research aims are to: 1) conduct focus groups of adolescents with SCD and their parents to identify plausible intervention targets for how problem solving strategies could impact SCD self-management; 2) tailor the generic problem solving model to the specific function of improving self-management for adolescents with SCD based on the plausible intervention targets identified in our first aim; and 3) conduct a single-arm adaptive pilot test of the tailored intervention in order to optimize the content and delivery of the intervention through an iterative series of quality improvement Plan-Do-Study-Act cycles. My educational objectives are to gain additional training in 1) health behavior change, including normal adolescent development, and problem solving as a cognitive-based behavior change strategy; 2) intervention development, including the use of qualitative methods to enhance cultural competency; and 3) clinical trial design, including rigorous pilot methodologies and the design and conduct of definitive trials. The results of this award will prepare me for my long term career goal as an independent investigator focused on developing and evaluating interventions to improve transition for adolescents with SCD. The research in this application builds directly on my prior work which has focused on measuring transition readiness and developing quality metrics for transition in SCD. I have put together an experienced mentoring team within a supportive research environment to help me gain the expertise necessary to be successful in this work and in my long term career goals. The results of this project will lead directly to a subsequent grant to conduct a multi-site RCT of our tailored intervention and will help establish my career as an independent investigator and expert in transition in SCD.

Public Health Relevance

Transition is a vulnerable time for adolescents with sickle cell disease (SCD) who lack the preparation in self- management skills necessary to assume adult responsibility for their health. Problem solving support is a key component of chronic disease self-management programs, and has been used successfully by Drs. Hegel and Silverstein to promote problem solving and coping skills in an urban population. This project focuses on the identification of intervention targets associated with self-management, and tailoring and testing a problem solving intervention to improve self-management skills in this high risk, underserved population.

National Institute of Health (NIH)
National Heart, Lung, and Blood Institute (NHLBI)
Mentored Patient-Oriented Research Career Development Award (K23)
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NHLBI Mentored Patient-Oriented Research Review Committee (MPOR)
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Werner, Ellen
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Boston Medical Center
United States
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