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

• 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
• 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

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.

项目摘要 镰状细胞病（SCD）是最常见的缩短寿命的遗传性疾病，主要影响黑人青年， 美国的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、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 健康的社会决定因素（SDOH）相关的障碍（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， 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的青少年和年轻成人（AYA）的医疗费用。然而， 现有的研究，描述了需要解决的具体因素，以改善自我管理， 这些年轻人的健康状况。我们的多学科团队使用社会生态学框架来开发一个 新的电子健康自我管理干预与SCD称为SCThrive。SCThrive联合集团 我们的试点工作表明，患者的生活质量得到了改善， AYA伴SCD患者的激活（知识、技能和自我效能）和自我管理行为， 控制条件。此外，那些更频繁使用该应用程序的人表现出更多的改善。老年 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，我们将最大限度地 SCThrive的临床获益：1）为老年AYA添加应用程序参与策略，2）进行更多 系统评估与SDOH相关的障碍，以及3）将解决这些障碍的方法纳入 干预本项目的目的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（主要结局;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和急诊室访视（次要结局）（目标2）。我们 假设随机分配至SCThrive组的青少年患者激活改善更大 （主要结局）与随机分配到标准治疗组（对照组）的患者相比。我们亦会探讨 SDOH相关障碍之间的关系（例如，耻辱，获得护理）和治疗反应（即，患者 激活和自我管理行为）。该团队在SCD、患者激活、行为 干预措施、电子保健/移动保健、坚持和自我管理、健康公平、随机对照试验和统计分析 并在儿科SCD干预研究方面进行了合作，为这一提议奠定了基础。研究 是重要的，因为它解决了需要有针对性的，文化适应性的干预措施，以改善自我， 青少年SCD的治疗。这项研究是创新的，因为它集成了一个强大的 评估和干预策略的SDOH相关障碍自我管理的SCD。