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

改善 SCD 青少年自我管理的社会生态方法

基本信息

批准号：
10795237
负责人：
Lori E Crosby
金额：
$ 83.06万
依托单位：
CINCINNATI CHILDRENS HOSP MED CTR
依托单位国家：
美国
项目类别：
财政年份：
2023
资助国家：
美国
起止时间：
2023-09-25 至 2028-06-30
项目状态：
未结题

来源：
https://reporter.nih.gov/project-details/10795237
关键词：
Acute Acute Pain Address Adherence Adolescence Adolescent Adolescent and Young Adult Affect Aftercare Age Behavior Behavior Therapy Black race Caregivers Caring Childhood Clinical Collaborations Communities Community Healthcare Companions Complex Discrimination Disease Disease Management Disease Progression Eating Education Emergency department visit Exercise Face Family Financial Hardship Foundations Genetic Diseases Health Health Care Costs Health Services Accessibility Healthcare Systems Hydration status Individual Intervention Intervention Studies Knowledge Life Link Magnetic Resonance Imaging Methods Modeling Moods Neurologic Organ Outcome Pain Participant Patients Pharmaceutical Preparations Prevention Preventive screening Race Randomized Randomized Controlled Clinical Trials Randomized, Controlled Trials Reporting Research Retinal Diseases Risk Self Efficacy Self Management Sickle Cell Anemia Site Social support Statistical Data Interpretation Strategic Planning Symptoms Telemedicine Time Transportation United States Work Youth chronic pain clinically significant comorbidity disorder risk eHealth efficacy evaluation experience follow-up functional disability good diet health care service utilization health equity health literacy health related quality of life high risk improved infancy innovation mHealth mobile application mortality multidisciplinary novel peer support prevent primary outcome secondary outcome skills social social health determinants social stigma standard care standard of care stress management treatment comparison treatment group treatment response virtual group young adult

项目摘要

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.

项目概要镰状细胞病（SCD）是最常见的缩短寿命的遗传性疾病，主要影响美国黑人青年美国。 SCD 在婴儿期首先对健康产生影响，但更严重的并发症（例如器官损伤）损伤、慢性疼痛、过早死亡的风险）在青春期出现。此外，这些种族化的年轻人面临着健康问题社会决定因素 (SDOH) 相关障碍（例如歧视、获得护理、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，并导致更高的死亡率疾病进展的风险。有效的疾病自我管理对于改善护理和结果至关重要降低患有 SCD 的青少年和年轻人 (AYA) 的医疗费用。不过，数量有限现有的研究描述了改善自我管理和需要解决的具体因素这些年轻人的健康成果。我们的多学科团队使用社会生态框架来开发针对患有 SCD 的 AYA 的新型电子健康自我管理干预措施称为 SCThrive。 SCThrive 联合集团通过配套的移动应用程序与治疗师进行治疗。我们的试点工作证明患者病情得到改善与 SCD 患者相比，AYA 患者的激活（知识、技能和自我效能）和自我管理行为一个控制条件。此外，那些更频繁使用该应用程序的人也表现出了更多的进步。年长的 AYA 较少使用该应用程序，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 的临床益处包括 1) 为老年 AYA 添加应用程序参与策略，2) 进行更多对 SDOH 相关障碍进行系统评估，以及 3) 将解决这些障碍的方法纳入干涉。该拟议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、功能障碍、健康相关质量治疗后和随访时的生活情况、急诊室就诊（次要结果）（目标 2）。我们假设随机接受 SCThrive 的青少年在患者激活方面会有更大的改善（主要结果）与随机接受标准护理（对照条件）的患者相比。我们还将探索 SDOH 相关障碍（例如耻辱、获得护理）与治疗反应（即患者激活和自我管理行为）。该团队拥有 SCD、患者激活、行为学方面的专业知识干预措施、电子健康/移动健康、依从性和自我管理、健康公平、随机对照试验和统计分析并合作开展了儿科 SCD 干预研究，为该提案奠定了基础。研究意义重大，因为它解决了有针对性的、针对文化的干预措施的需要，以提高自我患有 SCD 的青少年的管理。拟议的研究具有创新性，因为它集成了强大的针对 SCD 中与 SDOH 相关的自我管理障碍的评估和干预策略。