Peer Approaches to Lupus Self-Management (PALS)

项目摘要/摘要 拟议项目的目标是测试一项针对非洲的创新的、人性化的同行指导计划。 患有系统性红斑狼疮(SLE)的美国妇女。狼疮自我的同伴治疗方法 管理(PALS)研究旨在通过同行(导师)向其他人提供建模和强化 鼓励患有系统性红斑狼疮的非裔美国妇女(被辅导者)参与促进疾病的活动 自我管理。这项研究建立在关节炎自我研究领域三十年的工作基础上。 管理，但不同之处在于干预模式(同伴辅导)、疾病(SLE)和研究 人口(非裔美国人)未被研究或研究不足。通过随机对照设计，我们 将评估这种干预对自我管理和健康相关质量的有效性和机制(S) 生活质量(HRQOL)。这项计划有三个具体目标。第一个目标是确定同行的效力 非裔美国女性系统性红斑狼疮患者的疾病自我管理和HRQOL的导师干预。这个 第二个目标是确定同伴指导干预对患者报告和临床的影响 疾病活跃度的指标。第三个目标是确定同伴指导的成本效益。 对患有系统性红斑狼疮的非裔美国女性的疾病自我管理、疾病活动性和HRQOL的干预。 一个探索性的目标是确定同伴指导干预的调解人和主持人的角色。 包括疾病本身在内的非裔美国女性SLE患者的疾病活动性和HRQOL结果 管理、抑郁、信任和社会支持。拟议工作的直接目标是确定 该方案的疗效采用随机设计。长期目标是传播这一潜在的成本- 在不同的临床和社区环境中进行有效干预，努力改善疾病结局 非裔美国人妇女患有系统性红斑狼疮，降低了这一高危群体的发病率和死亡率。这一努力可能 为旨在改善疾病自我管理、疾病活跃度和 患有慢性病的非裔美国女性的HRQOL。

PROJECT SUMMARY/ABSTRACT The goal of the proposed project is to test an innovative, manualized peer mentorship program for African American women with systemic lupus erythematosus (SLE). The Peer Approaches to Lupus Self- management (PALS) study is 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. This study builds on three decades of work conducted in the field of arthritis self- management but differs in that the intervention mode (peer mentoring), the disease (SLE), and the study population (African Americans) are unstudied or understudied. Through a randomized, controlled design, we will assess the efficacy and mechanism(s) of this intervention on self-management and health related quality of life (HRQOL). This program has three specific aims. The first aim seeks to determine the efficacy of a peer mentorship intervention in African American women with SLE on disease self-management and HRQOL. The second aim is to determine the impact of a peer mentorship intervention on patient-reported and clinical indicators of disease activity. The third aim is to determine the cost effectiveness of a peer mentorship intervention on disease self-management, disease activity, and HRQOL, in African American women with SLE. An exploratory aim will be to determine the role of mediators and moderators of a peer mentorship intervention on disease activity and HRQOL outcomes in African American women with SLE, to include disease self- management, depression, trust, and social support. The immediate goal of proposed work is to determine the efficacy of the program in a randomized design. The long-term goal is to disseminate this potentially cost- effective intervention in diverse clinical and community settings in an effort to improve disease outcomes in African American women with SLE and reduce morbidity and mortality in this high risk group. This effort could result in a model for other programs that aim to improve disease self-management, disease activity, and HRQOL in African American women suffering from chronic illness.