Peer Approaches to Lupus Self-Management (PALS) - Diversity Supplement

《家长奖助金摘要》 父母资助(R01NR017892狼疮自我管理伙伴的对等方法)是随机的 旨在检查一种新的、根据文化定制的同伴指导干预措施是否改善的对照试验 非洲疾病自我管理、疾病活动指标和健康相关生活质量(HRQOL) 患有系统性红斑狼疮(SLE)的美国妇女。系统性红斑狼疮(SLE或狼疮)是一种 慢性自身免疫性疾病，与发病率、死亡率、医疗费用和 生活质量下降。在美国，非裔美国人的SLE患病率是普通人的三到四倍 较早发生系统性红斑狼疮的风险，以及与系统性红斑狼疮相关的疾病活动性、损害和死亡率 高加索人，其中非洲裔美国女性的发病率最高。有强有力的证据表明 患者水平的因素与结果相关，这就证明了干预针对他们的合理性。而当 融合了社会支持和健康教育的循证自我管理干预措施 系统性红斑狼疮患者、非裔美国人和 女性仍然不成比例地受到SLE的影响。同伴辅导干预在其他慢性疾病中有效 不成比例地影响少数群体的疾病，如糖尿病、艾滋病毒和肾脏疾病，但 目前还没有针对系统性红斑狼疮患者开发的经验证的同伴指导干预措施。 来自我们小组的初步数据表明，同伴辅导可以提高自我管理能力，减少疾病 活动，并改善患有SLE的非裔美国女性的健康相关生活质量(HRQOL)。方法： 这项研究将测试一个创新的、人性化的同伴指导计划，旨在提供建模和 同龄人(导师)对其他患有SLE的非裔美国女性(导师)的支持，以鼓励她们 参与促进疾病自我管理的活动。通过随机、“指导”或“支持” 组“对照设计，我们将评估这种干预的有效性和机制(S)在自我 管理、疾病活动和HRQOL。

ABSTRACT OF THE PARENT GRANT The parent grant (R01NR017892 Peer Approaches to Lupus Self-Management PALS) is a randomized controlled trial designed to examine whether a new, culturally tailored peer mentoring intervention improves disease self-management, indicators of disease activity, and health related quality of life (HRQOL) in African American women with systemic lupus erythematosus (SLE). Systemic lupus erythematosus (SLE or lupus) is a chronic autoimmune disease that is associated with increased morbidity, mortality, healthcare costs and decreased quality of life. African Americans in the USA have three to four times greater prevalence of SLE, risk of developing SLE at an earlier age, and SLE-related disease activity, damage, and mortality compared with Caucasians, with the highest rates experienced by African American women. There is strong evidence that patient-level factors are associated with outcomes, which justifies targeting them with intervention. While evidence-based self-management interventions that incorporate both social support and health education have reduced pain, improved function, and delayed disability among patients with SLE, African Americans and women are still disproportionately impacted by SLE. Peer mentoring interventions are effective in other chronic conditions that disproportionately affect minorities, such as diabetes mellitus, HIV, and kidney disease, but there is currently no empirically tested peer mentoring intervention developed for patients with SLE. Preliminary data from our group suggest that peer mentoring improves self-management, reduces disease activity, and improves health-related quality of life (HRQOL) in African American women with SLE. Methods: This study will test an innovative, manualized peer mentorship program designed to provide modeling and reinforcement by peers (mentors) to other African American women with SLE (mentees) to encourage them to engage in activities that promote disease self-management. Through a randomized, “mentored” or “support group” controlled design, we will assess the efficacy and mechanism(s) of this intervention in self- management, disease activity, and HRQOL.