Background/Purpose: Systemic lupus erythematosus (SLE) is a chronic autoimmune disease with fluctuating levels of disease activity.  Control of disease activity is associated with better outcomes and the ability to self-manage one’s health is an important skill towards this goal. We describe patient’s activation towards health self-management in a population of lupus patients and the factors associated with lower health self-management.

Methods: Patients from the Canadian Network for Improved Outcomes in SLE (CaNIOS) centers participating in the MyLupusGuide^TM randomized clinical trial were studied at baseline for their health self-management skills. The study is conducted online after patients receive a written invitation to participate, provide consent, and register online. The Patient Activation Measure (PAM) is a validated self-reported tool designed to measure an individual’s level of confidence, beliefs, knowledge, and skills about managing one’s health. PAM can be used as a continuous score or be divided into four levels with the first two levels indicating insufficient or low activation. We used the PAM as our outcome of interest and compared it to other self-reported data on demographics and psychosocial variables using several validated self-reported instruments (Table 1). Descriptive statistics were performed and univariate linear regressions using mixed model with random effect for site were used for continuous and categorical variables. 

Results: Baseline data collection for MyLupusGuide^™ trial was available for analysis on 539 patients from ten centers. Their baseline characteristics are reported in Table 1 with mean (sd) age = 50 (14), female = 91%, Caucasian = 74%. The mean PAM score was moderate at 61.2 (13.5) with a proportion of 16, 20, 42 and 22% in PAM levels 1 to 4 respectively,  indicating insufficient and low activation towards health self-management in 36% of patients. Variables associated with lower PAM scores (Table 1) included shorter disease duration, higher disease activity, lower physical and mental health status, depressive symptoms, less distraction and instrumental coping and more emotional coping, lower lupus self-efficacy and less social support. Categorical variables associated with lower PAM were being work disabled and less medication adherence.

Table 1: Baseline demographic, disease and psychosocial characteristics of 539 SLE patients and their association with activation towards health self-management. # CHIP=Coping with Health Injuries and Problems. *Higher values are associated with greater use of each coping related strategy.

Conclusion: More than one third of lupus patients showed low health self-management activation which is a common barrier to improvement of outcomes and health status for patients with lupus.  Reversible factors associated with poor health self-management include lupus disease activity, health status, depression and coping strategies.