Background/Purpose: The Intervention to Improve Quality of life for African-AmericaN lupus 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 lupus 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.

Methods: A unique ‘a-la-carte’ self-management program was offered to 50 African-American lupus patients participating in a longitudinal observational web-based SLE Database at the Medical University of South Carolina (MUSC). Each individualized intervention plan (IIP) included 1-4 options, including a mail-delivered arthritis kit, addition and access to a message board, participation in a support group, and enrollment in a local self-management program. A ‘set menu’ control group of 50 lupus patients was offered a standardized chronic disease self-management program only, and a control group of 50 lupus patients received usual care (UC), void of intervention components. Validated measures of stress, depression, and quality of life were collected in all patients in each condition before and after intervention activities. All participants met at least four components of the 1997 ACR revised criteria for SLE. In order to evaluate changes between baseline and 6 months post-intervention and 12 months post-intervention, compact scores were calculated after merging similar variables within the same topic area. Compact scores were then compared for each group, using two-sample t-tests.

Results: Between baseline and 6 months post-intervention, marginally significant improvements were observed in areas of stress management and pain management. The mean number of times participants applied stress management techniques increased from 0.69 to 1.68 in the intervention group (p=0.05). Improvements in the other two groups were not significant. The mean score of the intervention group increased from 8.83 to 11.29 (p=0.08) in the frequency of managing pain by applying positive techniques, but the other two groups did not display such improvements. Between baseline and 12 months post-intervention, an increasing trend persisted in the intervention group in the frequency of applying stress management techniques (p=0.02). Additionally, decreasing trends in activity limitation were observed in both the intervention and set-menu control groups.

Conclusion: Self-selection of program components has not been explored as an approach to improve disparate trends in quality of life, disease activity and depression, and stress among African-American lupus patients, but better self-management outcomes have been documented when participants are able to choose/dictate the content and/or pace of the respective treatment/intervention program.  As there is currently no “gold standard” self-management program specifically for SLE, the IQAN project may have a considerable impact on future research and policy decisions.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/an-intervention-to-improve-quality-of-life-for-african-american-lupus-patients/