Intervention to Improve Quality of Life for African-American Lupus Patients (IQAN)

拟议项目的目标是提高首席调查员的研究能力，为狼疮患者进行行为干预，包括干预设计、实施、数据收集和数据分析。旨在提高非裔美国人Iupus患者生活质量的干预计划(IQAN)旨在研究一个独特的量身定做的干预计划是否可以提高非裔美国人Iupus患者的生活质量，降低抑郁指标，并减少感受到的和生物上的压力指标。这项研究建立在关节炎自我管理领域三十年工作的基础上，但不同之处在于干预模式、疾病(狼疮)和研究人群(非裔美国人)没有得到研究或研究不足。IQAN项目将使用REACH、Efficiency、Adption、Implementation和Maintenance(RE-AIM)模型作为其理论框架。这项计划有三个具体目标。第一个目标是设计一种三人随机、等待名单控制的试验，采用以患者为中心的点菜方法，为受试者提供各种互动模式，允许他们选择自己想要的数量或数量。第二个目标是使用RE-AIM模型框架评估相互作用。在第一个目标之前要实现的第三个目标是使用以前收集的数据来表征非裔美国人狼疮患者中以患者为中心的护理障碍，以便确定患者需求和愿望的趋势，以及可用于制定和完善干预措施的无反应和不遵从性的相关性。 首席调查员的培训计划包括与七名具有丰富研究和临床经验的教师指导会议，以及有条理的课程安排。课程将侧重于与系统性红斑狼疮相关的健康教育和行为程序的设计，以建立对与临床试验结果的设计、实施、分析和解释相关的基本和实际问题的理解。课程将在初级导师的指导下辅以免疫学和狼疮临床经验的培训，以建立和理解风湿性疾病的病理学。这种指导和课程作业的结合旨在使申请者具备必要的工具，以创建一个有意义、有效和可持续的研究计划。

The goal of the proposed project is to enhance the Principal Investigator's research ability to conduct behavioral interventions for people with lupus This included intervention design, implementation, data collection and data analysis. The Intervention to Improve Quality of life for African- AmericaN Iupus patients (IQAN) Project is designed to examine whether a uniquely tailored intervention program can improve quality of life, decrease indicators of depression, and reduce perceived and biological indicators of stress in African American Iupus patients. This study builds on three decades of work conducted in the field of arthritis self-management but differs in that the intervention mode, the disease (lupus), and the study population (African-Americans) are unstudied or understudied. The IQAN Project will use the Reach, Effectiveness, Adoption, Implementation, and Maintenance (RE-AIM) model as its theoretical framework. This program has three specific aims. The first aim seeks to design a three armed randomized, wait list controlled trail that employs a patient-centered 'a-la-carte' approach that offers subjects a variety of models of interaction, allowing them to choose as many or few as they wish. The second aim is to assess the interaction, using the RE-AIM model framework. The third aim, to be achieved before the first aim, is to use previously collected data to characterize patient-centric barriers to care in African-American lupus patients, in order to identify trends in patient needs and desires, as well as correlates of non-response and non-compliance that can be used in the development and refinement of the intervention. The training plan for the Principal Investigator involves directed meetings with seven faculty mentors with abundant research and clinical experience, as well as structured coursework. Courses will be focused upon health education related to SLE and design of behavioral programs, in order to establish an understanding of the fundamental and practical issues related to the design, conduct, analysis, and interpretation of results of clinical trials. Coursework will be supplemented with training in immunology and lupus clinic experiences under the guidance of the primary mentor, in order to establish and understanding of the pathology of rheumatic disorders. This combination of mentoring and coursework is intended to equip the applicant with the tools necessary to create a meaningful, effective, and sustainable research program.