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

镰状细胞病青少年 (SMYLS) 的自我管理

• 批准号: 10563870
• 负责人: Shannon M. Phillips
• 金额: $ 56.24万
• 依托单位: MEDICAL UNIVERSITY OF SOUTH CAROLINA
• 依托单位国家: 美国
• 财政年份: 2023
• 资助国家: 美国
• 起止时间: 2023-04-21 至 2028-01-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10563870
• 关键词: Address; Adolescent and Young Adult; Adoption; Adult; Affect; Age; Anxiety; Behavior; Benchmarking; Biological; Caring; Cessation of life; Characteristics; Child; Childhood; Chronic; Clinic; Clinical; Communities; Consolidated Framework for Implementation Research; Data; Development; Disease; Education; Educational Materials; Electronics; Enrollment; Face; Family; Health; Health Promotion; Healthcare; Hydration status; Individual; Intervention; Interview; Mental Depression; Modeling; Monitor; Morbidity - disease rate; Motivation; National Institute of Nursing Research; Neurocognitive; Nurses; Nursing Research; Outcome; Outpatients; Pain; Pain interference; Pain management; Parents; Participant; Patients; Policies; Population; Prevention; Process; Provider; Psychosocial Factor; Quality of life; Randomized; Randomized, Controlled Trials; Readiness; Recording of previous events; Reduce health disparities; Reporting; Research; Resources; Risk; Risk Reduction; Role; Sampling; Self Management; Severity of illness; Sickle Cell Anemia; Site; Social Environment; Strategic Planning; Structure; Surveys; Symptoms; Testing; Treatment Protocols; Voice; Youth; acute care; behavioral outcome; body system; clinical care; comorbidity; complex chronic conditions; design; effectiveness evaluation; effectiveness testing; effectiveness/implementation hybrid; enhanced care; evidence base; experience; feasibility testing; future implementation; group intervention; health care service utilization; health care settings; health equity; implementation barriers; implementation facilitators; implementation intervention; improved; mHealth; mHealth self-management; medication compliance; mortality; patient-clinician communication; post intervention; primary outcome; psychosocial; recruit; secondary analysis; secondary outcome; skill acquisition; skills; social; social stigma; theories; tool; web app; young adult

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.

项目摘要/摘要 镰状细胞病(SCD)是一种影响每个器官系统的慢性疾病，需要终生 复杂的治疗方案。患有SCD的青少年和青壮年(Aya)经历非凡 以下方面的负面结果(如发病率、死亡率、并发症、急性护理利用率)增加 从儿童护理过渡到成人护理。为了减少负面结果，关键是有SCD的Aya发展 在过渡到成人护理之前有效的自我管理行为。然而，SCD的阿雅面临着挑战 自我管理行为的发展，再加上缺乏容易接近的自我 管理工具。我们的长期目标是开发一种全面的自我管理模式 Aya，SCD，整合了自我管理行为发展和影响的机制 可修改和固定的因素，以及解决机制和影响的临床护理模式 并为AYA和供应商提供改善自我管理行为的资源。本R01 申请到国家护理研究所(NINR)，针对青少年生活的自我管理 镰状细胞病(SMYLS)，将通过支持：1)有效性测试来推动我们实现这一目标 我们现有的、有理论基础的移动健康自我管理干预措施和2)评估 患者激活对自我管理行为发展的影响。在目标1中，我们将检查发布前 参与自我管理过程、自我管理行为、健康和健康的干预差异 生活质量结果，以及患者活跃度和结果之间的关系。在目标2中，我们将 确定采用自我管理干预的障碍和促进者，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 影响结果的可修改和固定变量。这项研究的结果将决定 一项理论上建立的、针对患有SCD的AYA患者的mHealth自我管理干预的有效性，确定 患者激活在SCD患者自我管理中的作用及其对自我管理的影响 管理行为。此外，如果干预措施被证明有效，关于障碍和促进者的调查结果 本研究中采取的干预措施可以应用到下一步的研究轨迹中，大范围 实施干预措施。我们的目标与2022-2026年国家 护理研究所起草战略计划，以减少疾病的严重性，症状和 进步，重点是通过改善自我管理行为来缩小健康差距 过渡到成人护理以减轻患有SCD的Aya患者随后的负面后果，该人群一直 在研究和医疗进步方面服务不足。