Association of Limited Health Literacy With Clinical and Patient-Reported Outcomes in Individuals With Systemic Lupus Erythematosus.

OBJECTIVE: Health literacy is an important social determinant of health, with limited health literacy associated with worse health outcomes. This study examined the associations between limited health literacy with patient-reported outcomes and disease activity/damage among 267 Black women with active systemic lupus erythematosus (SLE) enrolled in the Peer Approaches to Lupus Self-Management (PALS) program. METHODS: The three-item Chew Health Literacy Screening was used to dichotomize those reporting in the "limited" range on any item with outcomes compared via generalized linear models. Baseline surveys and assessments obtained at study entry as part of the PALS study were used. Primary outcomes included disease activity and lupus damage; other secondary outcomes included patient activation, self-efficacy, physician/patient communication, and quality of life. RESULTS: The study included 267 Black women with SLE. In covariate-adjusted analyses, participants with limited health literacy (88 [33%]) were more likely to have lower patient activation (Patient Activation Measure P < 0.0001), lower self-efficacy (Lupus Self-Efficacy P < 0.0001), higher lupus damage (self-administered Brief Index of Lupus Damage P = .016), higher disease activity (Systemic Lupus Activity Questionnaire symptom severity P = 0.006), and worse physician/patient communication (patient-centered care P < 0.0001) compared to those with adequate health literacy. Those with limited health literacy also reported worse lupus quality of life (P = 0.0004) and greater levels of stress (Perceived Stress Scale-4 P < 0.0001) and were 2.4 times more likely to have probable major depression (Patient Health Questionnaire Depression Scale-8 of ≥10 P = 0.004) and probable anxiety disorder (General Anxiety Disorder-7 of ≥10 P = 0.007) compared to those with adequate health literacy. CONCLUSION: Black women with SLE and limited health literacy have worse clinical outcomes and represent a particularly vulnerable population with significantly disparate health outcomes. These findings suggest health literacy and complexities of managing SLE may impair clinical care in multiple domains, ultimately contributing to higher disease activity and death/damage, and are important to address in clinical care and future interventions in patients with SLE.

The Effect of Travel Burden on Depression and Anxiety in African American Women Living with Systemic Lupus.

The United States has a deficit of rheumatology specialists. This leads to an increased burden in accessing care for patients requiring specialized care. Given that most rheumatologists are located in urban centers at large hospitals, many lupus patients must travel long distances for routine appointments. The present work aims to determine whether travel burden is associated with increased levels of depression and anxiety among these patients. Data for this study were collected from baseline visits of patients participating in a lupus study at MUSC. A travel/economic burden survey was assessed as well as the 8-item Patient Health Questionnaire (PHQ-8) and the 7-item Generalized Anxiety Disorder (GAD-7) survey as measures of depression and anxiety, respectively. Linear regression models were used to assess the relationship between travel burden and depression and anxiety. Frequency of healthcare visits was significantly associated with increased depression (ß = 1.3, p = 0.02). Significant relationships were identified between anxiety and requiring time off from work for healthcare appointments (ß = 4, p = 0.02), and anxiety and perceived difficulty in traveling to primary care providers (ß = 3.1, p = 0.04). Results from this study provide evidence that travel burden can have an effect on lupus patients' anxiety and depression levels.

Support Methodologies for African American Women With Lupus - Comparing Three Methods' Effects on Patient Activation and Coping.

Introduction: Systemic lupus erythematosus (SLE) is a chronic inflammatory disease in which the immune system attacks healthy tissues. While pharmaceutical therapies are an important part of disease management, behavioral interventions have been implemented to increase patients' disease self-management skills, provide social support, and encourage patients to take a more active role in their care. Methods: Three interventions are considered in this study; peer-to-peer methodology, patient support group, and a patient navigator program that were implemented among largely African American women with SLE at the Medical University of South Carolina (MUSC). Outcomes of interest were patient activation and lupus self-efficacy. We used a Least Squares Means model to analyze change in total patient activation and lupus self-efficacy independently in each cohort. We adjusted for demographic variables of age, education, income, employment, and insurance. Results: In both unadjusted and adjusted models for patient activation, there were no statistically significant differences among the three intervention methodologies when comparing changes from baseline to post intervention. Differences in total coping score from baseline to post intervention in the patient navigator group (-101.23, p-value 0.04) and differences in scores comparing the patient navigator with the support group were statistically significant (116.96, p-value 0.038). However, only the difference in total coping from baseline to post intervention for the patient navigator program remained statistically significant (-98.78, p-value 0.04) in the adjusted model. Conclusion: Tailored interventions are a critical pathway toward improving disease self-management among SLE patients. Interventions should consider including patient navigation because this method was shown to be superior in improving self-efficacy (coping scores).

Feasibility and preliminary data for a State-wide South Carolina Lupus Registry.

BACKGROUND: Systemic lupus erythematosus (SLE) or lupus is an autoimmune disorder whose cause and reason for disproportionate impact on minorities remains enigmatic. Furthermore, statistics describing lupus incidence and prevalence are outdated and often based on small samples. To begin to address this disparity this report describes preliminary data to be utilized in the development of a state-wide lupus registry in South Carolina. METHODS: A prospective survey and retrospective data from the South Carolina Budget and Control Board Office of Research & Statistics were used to capture data pertaining to knowledge of lupus, prevalence, and access to lupus care. RESULTS: Retrospective ORS data indicated there were 11,690 individuals living with lupus in 2014 with the average direct cost of $69,999.40 in medical care. Prospective surveys (N = 325), in over 16 locations in South Carolina, showed 31% knew someone with lupus, 16% had been diagnosed with lupus, and 50% did not know of a medical facility that treated lupus. CONCLUSION: A lupus registry and repository will provide ongoing access for researchers on the impact of lupus on communities in South Carolina. Lupus is highly prevalent, but disproportionately represented in terms of patient information and participation in clinical trials, so it is also expected that this preliminary work will provide an ongoing process in which the medical community can better engage lupus patients.

Peer approaches to self-management (PALS): comparing a peer mentoring approach for disease self-management in African American women with lupus with a social support control: study protocol for a randomized controlled trial.

BACKGROUND: Systemic lupus erythematosus (SLE or lupus) is a chronic autoimmune disease that is associated with increased morbidity, mortality, healthcare costs and decreased quality of life. African Americans in the USA have three to four times greater prevalence of SLE, risk of developing SLE at an earlier age, and SLE-related disease activity, damage, and mortality compared with Caucasians, with the highest rates experienced by African American women. There is strong evidence that patient-level factors are associated with outcomes, which justifies targeting them with intervention. While evidence-based self-management interventions that incorporate both social support and health education have reduced pain, improved function, and delayed disability among patients with SLE, African Americans and women are still disproportionately impacted by SLE. Peer mentoring interventions are effective in other chronic conditions that disproportionately affect minorities, such as diabetes mellitus, HIV, and kidney disease, but there is currently no empirically tested peer mentoring intervention developed for patients with SLE. Preliminary data from our group suggest that peer mentoring improves self-management, reduces disease activity, and improves health-related quality of life (HRQOL) in African American women with SLE. METHODS: This study will test an innovative, manualized peer mentorship program designed to provide modeling and reinforcement by peers (mentors) to other African American women with SLE (mentees) to encourage them to engage in activities that promote disease self-management. Through a randomized, "mentored" or "support group" controlled design, we will assess the efficacy and mechanism(s) of this intervention in self-management, disease activity, and HRQOL. DISCUSSION: This is the first study to test peer mentorship as an alternative strategy to improve outcomes in African American women with SLE. This could result in a model for other programs that aim to improve disease self-management, disease activity, and HRQOL in African American women suffering from chronic illness. The peer mentoring approach is uniquely fitted to African Americans, and this intervention has the potential to lead to health improvements for African American women with SLE that have not been attainable with other interventions. This would significantly reduce disparities and have considerable public health impact. TRIAL REGISTRATION: ClinicalTrials.gov, NCT03734055 . Registered on 27 November 2018.