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 i s 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.
Since there is currently no accepted self-management program specifically for lupus; assessing and documenting this project's public health impact using the Reach; Effectiveness; Adoption; Implementation; and Maintenance (RE-AIM) framework could have considerable implications for future research and policy decisions.
|Williams, Edith M; Lorig, Kate; Glover, Saundra et al. (2016) Intervention to Improve Quality of life for African-AmericaN lupus patients (IQAN): study protocol for a randomized controlled trial of a unique a la carte intervention approach to self-management of lupus in African Americans. BMC Health Serv Res 16:339|
|Williams, Edith M; Bruner, Larisa; Adkins, Alyssa et al. (2016) I too, am America: a review of research on systemic lupus erythematosus in African-Americans. Lupus Sci Med 3:e000144|
|Williams, Edith M; Zhang, Jiajia; Zhou, Jie et al. (2014) Predictors of non-response and non-compliance in African American lupus patients: Findings from the Balancing Lupus Experiences with Stress Strategies (BLESS) Study. Int J Med Biomed Sci 2:6-19|