Intervention to Improve Quality of life for African-AmericaN lupus patients (IQAN

本项目的目标是提高首席研究员对狼疮患者进行行为干预的研究能力，包括干预的设计、实施、数据收集和数据分析。改善非裔美国Iupus患者生活质量的干预（IQAN）项目旨在检查一个独特的量身定制的干预方案是否可以改善非裔美国Iupus患者的生活质量，减少抑郁指标，减少压力的感知和生物学指标。本研究建立在关节炎自我管理领域开展了三十年的工作基础上，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）尚未研究或研究不足。IQAN项目将使用覆盖、有效性、采用、实施和维护（RE-AIM）模型作为其理论框架。这个项目有三个具体目标。第一个目标是设计一个三臂随机、等候名单控制的试验，采用以患者为中心的“点单”方法，为受试者提供各种互动模型，允许他们选择尽可能多或少的模型。第二个目标是使用RE-AIM模型框架评估交互。第三个目标，在第一个目标之前实现，是使用先前收集的数据来表征非裔美国狼疮患者以患者为中心的护理障碍，以确定患者需求和愿望的趋势，以及可用于开发和改进干预措施的无反应和不依从性的相关性。

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.