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

项目总结/摘要 镰状细胞病（SCD）是一种慢性疾病，影响每一个器官系统，需要终身 复杂的治疗方案。患有SCD的青少年和年轻人（AYA） 负面结果的增加（例如，发病率、死亡率、并发症、急性护理利用率） 从儿科到成人护理的转变。为了减轻负面结果，患有SCD的AYA发展至关重要 在过渡到成人护理之前有效的自我管理行为。然而，患有SCD的AYA面临挑战 自我管理行为的发展，由于缺乏容易获得的自我， 管理工具。我们的长期目标是发展一个全面的自我管理模式， 合并SCD的AYA，包括自我管理行为发展和影响机制 可修改和固定的因素，沿着临床护理模式，解决机制和影响 因素，并为AYA和供应商提供资源，以改善自我管理行为。R01 申请国家护理研究所（NINR），青年生活的自我管理 镰状细胞病（SMYLS）将推动我们实现这一目标，支持：1）有效性测试， 我们现有的，理论上成立，mHealth自我管理干预和2）评估的作用， 患者激活对自我管理行为发展的影响。在目标1中，我们将检查前-后 干预差异参与自我管理过程，自我管理行为，健康和 生活质量结果，以及患者激活和结果之间的关系。在目标2中，我们将 确定采用自我管理干预的障碍和促进因素，以告知未来 实施举措。在探索性目标中，我们将确定社会环境和心理社会 影响结果的可变和固定变量。这项研究的结果将决定 一个理论上成立的有效性，mHealth自我管理干预与SCD的AYA，确定 患者激活在患有SCD的AYA自我管理中的作用，并描述对自我管理的影响。 管理行为。此外，如果干预措施被证明是有效的， 本研究中的干预措施可以应用于本研究的下一步轨迹，大规模 实施干预。我们的目标与2022 - 2026年国家发展计划相一致 护理研究所起草战略计划，以减轻疾病严重程度、症状和 进展，重点是通过改善自我管理行为， 过渡到成人护理，以减轻患有SCD的AYA患者随后的负面结果， 在研究和医疗进步方面服务不足。

PROJECT SUMMARY/ABSTRACT 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.