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

狼疮自我管理的同伴方法 (PALS) - 多样性补充

• 批准号: 10238250
• 负责人: Edith Marie Williams
• 金额: $ 1.9万
• 依托单位: MEDICAL UNIVERSITY OF SOUTH CAROLINA
• 依托单位国家: 美国
• 财政年份: 2018
• 资助国家: 美国
• 起止时间: 2018-09-26 至 2023-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10238250
• 关键词: Address; Adherence; Affect; African American; Age; Caring; Caucasians; Chronic; Clinical; Collaborations; Complex; Data; Development; Diabetes Mellitus; Diagnosis; Diagnostic tests; Disadvantaged; Disease; Disease Management; Disease remission; Educational Background; Fatal Outcome; Future; HIV; Health; Health Care Costs; Health Personnel; Health education; Health system; Intervention; Interview; Kidney Diseases; Knowledge; Link; Literature; Lupus; Mentors; Mentorship; Methods; Minority; Modeling; Morbidity - disease rate; Outcome; Parents; Patient-Focused Outcomes; Patients; Population; Prevalence; Primary Health Care; Process; Provider; Psychological reinforcement; Qualitative Methods; Quality of Care; Quality of life; Race; Randomized; Randomized Controlled Trials; Research; Rheumatology; Risk; Sampling; Self Management; Social support; Socioeconomic Status; Structure; Support Groups; System; Systemic Lupus Erythematosus; Testing; Therapeutic; Therapeutic Intervention; Time; Ursidae Family; Woman; burden of illness; care coordination; care fragmentation; care providers; chronic autoimmune disease; design; disability; effective intervention; enhancing factor; evidence base; experience; health related quality of life; improved; improved functioning; innovation; lens; mortality; novel; organizational structure; pain reduction; parent grant; parent project; patient oriented; peer; peer coaching; population health; programs; research study; sex; social; social factors; therapeutic development; trial design

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.

专利授权摘要 父母补助金（R01 NR 017892狼疮自我管理帕尔斯的同伴方法）是一项随机 对照试验，旨在检查一种新的、文化上定制的同伴指导干预是否能改善 非洲人的疾病自我管理、疾病活动性指标和健康相关生活质量 美国女性系统性红斑狼疮（SLE）。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、医疗保健费用和 生活质量下降。美国的非裔美国人SLE患病率高出三到四倍， SLE相关疾病的活动性、损害和死亡率， 白种人，非洲裔美国妇女的发病率最高。有强有力的证据表明 患者层面的因素与结果相关，因此有理由针对这些因素进行干预。而 以证据为基础的自我管理干预措施，包括社会支持和健康教育， 在SLE患者、非裔美国人和 女性仍然不成比例地受到SLE的影响。同伴指导干预在其他慢性疾病中是有效的 对少数群体影响不成比例的疾病，如糖尿病、艾滋病和肾病， 目前还没有为SLE患者开发的经经验检验的同伴指导干预。 我们小组的初步数据表明，同伴指导可以改善自我管理，减少疾病， 活动，并改善健康相关的生活质量（HRQOL）在非洲裔美国女性SLE。研究方法： 这项研究将测试一个创新的，手动同伴指导计划，旨在提供建模和 由同伴（导师）加强对其他患有SLE的非洲裔美国妇女（学员）的指导，鼓励她们 参与促进疾病自我管理的活动。通过一个随机的，“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。