Self-Management for Youth Living with Sickle Cell Disease (SMYLS)

Sponsor/Type: NIH/NINR
Project Period: 04/21/2023 – 01/31/2028

Sickle cell disease (SCD) is a chronic condition that affects every organ system and requires lifelong complicated treatment regimens. Adolescents and young adults (AYA) with SCD experience remarkable increases in negative outcomes (e.g., morbidity, mortality, complications, acute care utilization) following transition from pediatric to adult care. To mitigate negative outcomes, it is critical that AYA with SCD develop effective self-management behaviors prior to transition to adult care.

However, AYA with SCD face challenges to self-management behavior development that are compounded by the lack of easily accessible self-management tools. Our long-term objectives are to develop a comprehensive model of self-management for AYA with SCD that incorporates mechanisms of self-management behavior development and influencing modifiable and fixed factors, along with a clinical model of care that addresses mechanisms and influencing factors and provides AYA and providers with resources to improve self-management behaviors.

This R01 application to the National Institute of Nursing Research (NINR), Self-Management for Youth Living with Sickle Cell Disease (SMYLS), will advance us towards this objective by supporting: 1) effectiveness testing of our existing, theoretically founded, mHealth self-management intervention and 2) assessment of the role of patient activation on self-management behavior development.

In Aim 1, we will examine the pre-post intervention differences in engagement in self-management processes, self-management behaviors, health and quality of life outcomes, and the relationships among patient activation and outcomes.

In Aim 2, we will determine barriers and facilitators to adoption of the self-management intervention to inform future implementation initiatives. In the Exploratory Aim, we will identify socioenvironmental and psychosocial modifiable and fixed variables that influence outcomes. Findings from this study will determine the effectiveness of a theoretically founded, mHealth self-management intervention for AYA with SCD, identify the role of patient activation in self-management for AYA with SCD, and characterize influences on self-management behaviors.

In addition, if the intervention is proven effective, findings on barriers and facilitators to intervention adoption in this study can be applied to the next step in this research trajectory, wide-scale implementation of the intervention. Our objectives are consistent with the 2022 – 2026 National Institute of Nursing Research Draft Strategic Plan to reduce disease severity, symptoms, and progression with a focus on reducing health disparities by targeting improved self-management behaviors pre-transition to adult care to mitigate subsequent negative outcomes in AYA with SCD, a population that has been underserved in research and healthcare advancements.

For more information contact
Shannon Phillips
Ph.D., RN