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

Sickle cell disease (SCD) is a chronic condition that affects every organ system and requires lifelong complicated treatment regimens. Adolescents and young adults with sickle cell disease experience remarkable increases in negative outcomes following transition from pediatric to adult care. The objective of this study is to develop and evaluate the effectiveness of a comprehensive self management model for adolescents and young adults with sickle cell diseases. The model integrates mechanisms of self-management behavior development with both influencing modifiable and fixed factors. It also provides adolescents and young adults and healthcare provides with resources designed to improve self-management behaviors and related health outcomes.

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