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.
We used baseline results from the MyLupusGuide
The average age was 50±14 years, 93% were female, 74% were Caucasian and the average disease duration was 17±12 years. The mean PAM score was 61.2±13.5 with 36% of participants scoring in the two lower levels, indicating low activation. Variables associated with low activation included being single, lower physical health status, lower self-reported disease activity, lower self-efficacy, use of more emotional coping and less distraction and instrumental coping strategies, and perceived lack of clarity in patient-doctor communication.
Low patient activation was observed in more than one third of lupus patients indicating 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.