The intervention to improve quality of life for African American lupus patients project: Incorporating the element of choice to improve disease self-management and quality of life: A randomized controlled study

Abstract

Background

The Intervention to Improve Quality of life for African American lupus patients (IQAN) Project is a three armed randomized, wait list-controlled trial focused on providing a variety of self-management tools to participants. We focus on African American individuals with lupus due to the increased morbidity and mortality in this population.

Purpose

To examine whether a unique ‘a-la-carte’ self-management program improved quality of life, decreased depression, and reduced perceived and biological indicators of stress in African American lupus patients.

Methods

Individualized intervention plans (IIP’s) offered 1–4 options, including a mail-delivered arthritis kit, message board, support group, and enrollment in a self-management program. A ‘set menu’ control condition included a standardized chronic disease self-management program only, and a control condition was usual care (UC). Validated measures of stress, depression, and quality of life were collected in all patients before and after intervention activities. To evaluate changes between baseline and post-intervention, compact scores were compared across groups, using two-sample t-tests.

Results

Improvements were observed in areas of stress management and pain management (p = 0.05). The frequency of managing pain by applying positive techniques increased in the intervention group (p = 0.08), but the other two groups did not display such improvements. An increasing trend persisted in the intervention group in the frequency of applying stress management techniques (p = 0.02) and decreasing trends in activity limitation were observed in both the intervention and set-menu control groups.

Conclusions

Better self-management outcomes were observed when participants were able to dictate the content or pace of the intervention program. This suggests that self-selection of program components has the potential to improve disparate trends in quality of life, disease activity and stress among African American lupus patients, which could impact future research and policy decisions.

Keywords

Lupus erythematosus systemic clinical trial quality of life black or African American self-management

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