Challenges of Perceived Self‐Management in Lupus

Objective Systemic lupus erythematosus is a chronic autoimmune disease with varied and unpredictable levels of disease activity. The ability to self‐manage lupus is important in controlling disease activity. Our objective was to determine levels of patient activation toward self‐management in lupus. Methods We used baseline results from the MyLupusGuide study, which had recruited 541 lupus patients from 10 lupus centers. We used the Patient Activation Measure (PAM), a validated self‐reported tool designed to measure activation toward self‐management ability, as our primary variable and examined its association with demographic, disease‐related, patient–provider communication and psychosocial variables captured in our study protocol. Univariable and multivariable linear regressions were performed using linear mixed models, with a random effect for centers. Results The mean ± SD age of participants was 50 ± 14 years, 93% were female, 74% were White, and the mean ± SD disease duration was 17 ± 12 years. The mean ± SD PAM score was 61.2 ± 13.5, with 36% of participants scoring in the 2 lower levels, indicating low activation. Variables associated with low activation included being single, having lower physical health status, lower self‐reported disease activity, lower self‐efficacy, use of more emotional coping and fewer distraction and instrumental coping strategies, and a perceived lack of clarity in patient–doctor communication. Conclusion Low patient activation was observed in more than one‐third of lupus patients, indicating that a large proportion of patients perceived that they are lacking in lupus self‐management skills. These results highlight a modifiable gap in perceived self‐management ability among patients with lupus.