) Research: Sickle cell disease (SCD) is the most common genetic disorder in the US, affecting about 100,000 Americans, and about 1 in 400 African American live births, incurring annual health care costs of $335 million. SCD complications lead to significant declines in health-related quality of life (HRQOL), culminating in early mortality, particularly among adolescents and young adults (AYA). Hydroxyurea (HU) reduces morbidity and mortality, improves HRQOL and lowers healthcare utilization. Low HU adherence is common and has been associated with worse health outcomes, poor HRQOL and increased healthcare utilization. Our preliminary data suggested that low HU adherence was associated with worse HRQOL scores. However, the longitudinal relationship between HU adherence and HRQOL remains unclear. Our pilot data also suggest that AYA with SCD are interested in using a multi-function SCD-app to facilitate disease self-management and to improve HU adherence, which we were able to develop a prototype for (HU-Go app).
The specific aims for Dr. Badawy's research project are to: (1) Determine the longitudinal relationship of HU adherence behavior to health-related quality of life, barriers to adherence and habit formation among AYA with SCD; (2) Refine the design of HU-Go using an iterative user-centered design approach and determine the usability and usefulness of the refined HU- Go app; and (3) Test the feasibility and acceptability of the HU-Go app as an mHealth behavioral intervention to improve HU adherence among AYA with SCD. Candidate: Dr. Badawy is a pediatric hematologist. The support of this career development award will help Dr. Badawy become an independent physician-investigator with the training and experience necessary to improve medication adherence behavior and HRQOL in adolescents with SCD using mHealth behavioral interventions. Dr. Badawy will use this award to build on his existing foundation in health services and outcomes research to develop expertise in: (1) mHealth behavioral interventions research and the application of user-centered design principles; (2) developmental and behavior change theory as it relates to medication adherence with particular focus on AYA; (3) use of mobile technologies for clinical outcomes assessment, including, HRQOL; (4) advanced biostatistics; and (5) behavioral clinical trials for mHealth-based interventions. These skills will enable Dr. Badawy to establish an independent, programmatic line of research and build a transdisciplinary research team to integrate behavioral and technological approaches to improve health outcomes and HRQOL in adolescents with SCD. Dr. Badawy will achieve these career objectives through a 5-year career development plan that involves structured didactics, patient-oriented experiential research, and intensive mentoring. Environment: The exceptional institutional environment will be critical to support Dr. Badawy's career development, including the (1) Dedicated resources from the Department of Pediatrics, (2) Strong research infrastructure at Northwestern University (NU), and (3) Established collaborations between Lurie Children's Hospital and NU Feinberg School of Medicine.

Public Health Relevance

/Public Health Relevance Statement Hydroxyurea (HU) is a commonly prescribed disease-modifying medication, approved by the Food and Drug Administration (FDA), for adolescents with sickle cell disease; however, low hydroxyurea adherence limits the use of this medication in clinical practice. In addition, the longitudinal relationship between hydroxyurea adherence and patients' health-related quality of life, such as pain, fatigue and depression, has not been studied, and, to date, mobile health or mHealth interventions for hydroxyurea adherence have not been evaluated in adolescents with sickle cell disease. This study will examine the relationship between hydroxyurea adherence and health-related quality of life overtime among adolescents with sickle cell disease, and determine if a mobile or smartphone app (HU-Go) is a feasible and an acceptable intervention that can improve hydroxyurea (HU) adherence in this 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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Tonkins, William P
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Children's Memorial Hospital (Chicago)
United States
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