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.