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

该项目的目的是提高主要研究者对狼疮患者进行行为干预的研究能力，包括干预设计、实施、数据收集和数据分析。 改善非裔美国人Iupus患者生活质量的干预措施（IQAN）项目旨在检查一个独特的定制干预方案是否可以改善非裔美国人Iupus患者的生活质量，降低抑郁指标，并降低感知和生物学压力指标。 这项研究建立在关节炎自我管理领域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（非洲裔美国人）未被研究或研究不足。 IQAN项目将使用范围、有效性、采用、实施和维护（RE-AIM）模型作为其理论框架。 该方案有三个具体目标。 第一个目标是设计一个三臂随机，等待名单控制的试验，采用以患者为中心的“点菜”的方法，为受试者提供各种模型的互动，让他们选择尽可能多或少，因为他们希望。 第二个目的是评估的相互作用，使用RE-AIM模型框架。第三个目标，要实现的第一个目标之前，是使用以前收集的数据来表征以患者为中心的障碍，以照顾非洲裔美国狼疮患者，以确定患者的需求和愿望的趋势，以及相关的非响应和非依从性，可用于开发和完善的干预。 主要研究者的培训计划包括与七位具有丰富研究和临床经验的教师导师进行直接会议，以及结构化的课程。 课程将侧重于与SLE相关的健康教育和行为计划的设计，以建立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补充免疫学和狼疮临床经验的培训，以建立和了解风湿性疾病的病理学。这种指导和课程的结合旨在为申请人提供必要的工具，以创建一个有意义的，有效的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.