A socio-ecological approach for improving self-management in adolescents with SCD

项目总结 镰状细胞病(SCD)是最常见的缩短寿命的遗传性疾病，主要影响美国的黑人青年 美国。SCD在婴儿期对健康有第一次影响，但更严重的并发症(如器官) 损伤、慢性疼痛、早期死亡风险)出现在青春期。此外，这些种族主义的年轻人面临着 与健康(SDOH)有关的障碍的社会决定因素(例如歧视、获得护理的机会、经济困难) 这可能会影响他们获得护理的机会，导致错过预防并发症的机会和更高的 疾病进展的风险。有效的疾病自我管理是改善护理和预后的关键 以及降低患有SCD的青少年和年轻人(AYA)的医疗费用。然而，有有限的 现有的研究描述了需要解决的具体因素，以改善自我管理和 这些年轻人的健康结果。我们的多学科团队使用社会生态学框架开发了一种 针对患有SCD的AYA患者的新型电子健康自我管理干预，称为SCThrive。SCThrive组合组 使用配套的移动应用程序与治疗师进行会话。我们的试点工作显示患者情况有所改善 精神分裂症患者的激活(知识、技能和自我效能感)和自我管理行为 一种控制条件。此外，那些更频繁地使用这款应用的人表现出了更多的进步。更老的 Aya较少使用这款应用程序，并报告了更多与SDOH相关的自我管理障碍。因此，我们将最大化 SCThrive的临床好处1)为老年Aya增加了应用程序参与策略，2)进行了更多 系统地评估与SDOH相关的障碍，以及3)将解决这些障碍的方法整合到 干预。该项目的目标是进行一项随机对照试验(RCT) 四个SCD中心的SCD青少年。我们的目标是检查SCThrive对患者的影响 激活(主要结果；目标1)和自我管理行为、功能残疾、与健康有关的质量 治疗后和后续行动(目标2)时的生命质量、急诊室就诊(次要结果)。我们 假设随机使用SCThrive的青少年在患者激活度方面会有更大的改善 (主要结果)与随机接受标准护理的患者(对照条件)进行比较。我们还将探索 SDOH相关障碍(例如，耻辱、获得护理的机会)与治疗反应(即，患者)之间的关系 激活和自我管理行为)。该团队在SCD、患者激活、行为 干预措施、电子健康/移动健康、坚持和自我管理、健康公平、随机对照和统计分析 并在为这一提议奠定基础的儿科SCD干预研究上进行了合作。这项研究 意义重大，因为它解决了有针对性的、文化上量身定做的干预措施的需求，以提高自我 青少年SCD的管理。这项拟议的研究具有创新性，因为它集成了稳健的 SCD中SDOH相关自我管理障碍的评估和干预策略。

PROJECT SUMMARY Sickle cell disease (SCD), the most common life-shortening genetic disorder, affects primarily Black youth in the United States. SCD has its first health impact in infancy, but more severe complications (e.g., organ damage, chronic pain, risk for early mortality) emerge in adolescence. Further, these racialized youth face social determinants of health (SDOH)-related barriers (e.g., discrimination, access to care, financial hardship) that may impact their access to care, resulting in missed opportunities to prevent complications and a higher risk for disease progression. Effective disease self-management is essential to improving care and outcomes and lowering healthcare costs for adolescents and young adults (AYA) with SCD. However, there is limited research available describing the specific factors that need to be addressed to improve self-management and health outcomes for these youth. Our multidisciplinary team used a socioecological framework to develop a novel ehealth self-management intervention for AYA with SCD called SCThrive. SCThrive combines group sessions with a therapist with a companion mobile app. Our pilot work demonstrated improved patient activation (knowledge, skills, and self-efficacy) and self-management behaviors in AYA with SCD compared to a control condition. In addition, those who use the app more frequently showed more improvements. Older AYA used the app less and reported more SDOH-related barriers to self-management. Thus, we will maximize the clinical benefit of SCThrive by 1) adding app engagement strategies for older AYA, 2) conducting a more systematic assessment of SDOH-related barriers, and 3) integrating ways to address these barriers into the intervention. The objective of this proposed project is to conduct a randomized controlled trial (RCT) with adolescents with SCD across four SCD centers. Our aims are to examine the impact of SCThrive on patient activation (primary outcome; Aim 1) and self-management behaviors, functional disability, health-related quality of life, and emergency room visits (secondary outcomes) at post-treatment and follow-up (Aim 2). We hypothesize that adolescents randomized to SCThrive will have greater improvement in patient activation (primary outcome) compared to those randomized to standard care (control condition). We will also explore the relationship between SDOH-related barriers (e.g., stigma, access to care) and treatment response (i.e., patient activation and self-management behaviors). The team has expertise in SCD, patient activation, behavioral interventions, ehealth/mhealth, adherence and self-management, health equity, RCT and statistical analyses and has collaborated on pediatric SCD intervention studies that lay the foundation for this proposal. The study is significant because it addresses the need for targeted, culturally tailored interventions to improve self- management in adolescents with SCD. The proposed research is innovative because it integrates a robust assessment and intervention strategy for SDOH-related barriers to self-management in SCD.