Psychosocial Factors and Lupus Disease Progression Among African American Women

项目总结/摘要 患有自身免疫性疾病的人，包括患有系统性红斑狼疮（SLE）的人， 尤其受到COVID-19疫情的影响。有预先存在的健康状况的人， 因为SLE更容易发生严重疾病。因此，SLE患者的检测和疫苗接种， 家庭和社会网络中的其他人是最重要的公共卫生问题。然而，结构性障碍 阻止了测试和疫苗接种的优化，特别是非洲裔美国妇女， 经历了独特的挑战来参与这些行为。虽然只有7%的人 美国非裔美国妇女占所有SLE病例的大约一半。现有障碍 获得医疗保健（例如，距离，交通，技术的获取）在此期间被放大 前所未有的时期。其他心理社会压力因素，包括与COVID-19疾病相关的压力， 丧亲之痛，就业，种族主义，多重角色责任和其他家庭需求，妥协 慢性病管理以及检测和疫苗接种行为。 此竞争性修订申请的目的是识别COVID-19的障碍和促进因素 使用定性和定量方法对SLE患者进行检测和疫苗接种。我们将 评估一种新的同伴主导的干预措施对提高患有这些疾病的人的这些行为的有效性。 SLE和其他人在他们的家庭/社会网络中使用随机对照试验设计。其目的是 该项目将通过利用现有的2500多名SLE患者名册来实现， 伯明翰，亚拉巴马。我们还招募生活在路易斯安那州新奥尔良的SLE患者。这两个领域 鉴于该区域的检测和疫苗接种率较低，这是一个高度优先事项。我们的干预是基于个人 量身定制的外展和教育，特别是在具有 自身免疫性疾病;再加上提供家庭测试的选择，以及一个“疫苗礼宾”计划， 包括确定最方便的地点，安排约会，安排交通， 为他们及其网络成员发送提醒。这种方法得到了研究的支持， 犹豫可以通过增加机会和实施促进者来有效解决， 测试并接种疫苗。减少障碍可以减轻犹豫和消极拒绝;当提供测试和 接种疫苗，即使是那些犹豫不决的人也可以接受。此外，还有一些人确实在测试， 疫苗“愿意”，但由于其他限制（例如，时间，不便，不知道 去哪里）;向他们提供获得检测和疫苗接种的工具将促进参与。我们也 假设招募一个测试/疫苗接种“伙伴”将增强这些行为，正如其他研究所建议的那样， 关于社交网络和同伴规范在支持健康方面的重要性的行为干预研究- 相关行为。这项研究对临床人群的测试/疫苗接种具有更广泛的意义。

PROJECT SUMMARY/ABSTRACT People living with an autoimmune disease, including those with systemic lupus erythematosus (SLE), have been especially impacted by the COVID-19 pandemic. People with a pre-existing health condition such as SLE are more susceptible to severe disease. Hence, testing and vaccination among people with SLE, and others in their household and social network is a paramount public health concern. However, structural barriers have prevented optimization of testing and vaccination, and African American women in particular have experienced qualitatively unique challenges to engage in these behaviors. Though only about 7% of the total U.S. population, African American women represent approximately half of all SLE cases. Existing barriers in access to health care (e.g., distance, transportation, access to technology) have been magnified during this unprecedented period. Other psychosocial stressors, including those related to COVID-19 illness and bereavement, employment, racism, and multiple role responsibility and other family demands, compromise chronic disease management as well as testing and vaccination behaviors. The purpose of this competitive revision application is to identify barriers and facilitators to COVID-19 testing and vaccination among people living with SLE using both qualitative and quantitative methods. We will evaluate the efficacy of a novel peer-led intervention to enhancing these behaviors among people living with SLE and others in their household/social network using a randomized controlled trial design. The aims of this project will be achieved by leveraging an existing patient roster of over 2500 people living with SLE in Birmingham, Alabama. We also recruit people living with SLE in New Orleans, Louisiana. These two areas are a high priority given low rates of testing and vaccination in the region. Our intervention is based on individually tailored outreach and education that addresses concerns about COVID-19 specifically in the context of having an autoimmune disease; plus providing options for home testing, and a “vaccine concierge” program that involves identifying the most convenient location, scheduling the appointment, arranging for transportation, and sending reminders for them and their network members. This approach is supported by research indicating that hesitancy may be effectively addressed by increasing opportunities and implementing facilitators to get tested and vaccinated. Lessening barriers mitigates hesitancy and passive refusal; when offered testing and vaccination, even those who are hesitant may accept. Moreover, there are those who are indeed testing and vaccine “willing,” but have not yet been because of other constraints (e.g., time, inconvenience, not knowing where to go); providing them with tools to access testing and vaccination will facilitate engagement. We also hypothesize that recruiting a testing/vaccination “partner” will enhance these behaviors as suggested by other behavioral intervention research on the importance of social networks and peer norms in supporting health- related behaviors. This research has broader implications for testing/vaccination in clinical populations.