Background : Systemic Lupus Erythematosus (SLE) is an unpredictable multisystem chronic disease that leads to insecurity, requires life-style adaptations, work accommodations and longterm medication use. We previously reported that a web-based interactive navigator named MyLupusGuide (MLG) was well accepted by lupus patients and met with their informational needs. When used without reinforcement however MLG did not change patient activation towards self-management. We performed additional analyses to test if subgroups of patients were more likely to become activated than others in a large lupus population.
Methods : Population and recruitment strategy: Patients from ten lupus centers were randomized to either immediate access to MLG (NOW) or usual care (LATER). Partial cross-over occurred at three months and there was a final assessment at six months. Data collected: Demographic and socioeconomic data were collected at baseline. The 13-item Patient Activation Measure (PAM) was used to assess patient`s healthcare engagement. Higher PAM score relates to greater engagement. Additional self-reported measures for self-efficacy (Lupus Self-Efficacy Scale - LSES) and coping strategies (Coping with Health Injuries and Problems - CHIP) were obtained at baseline, 3 and 6 months. Statistical analyses: Linear mixed models were used to test the evolution of PAM over time between groups. This abstract reports on the following subanalyses: analyses of the subgroup with low PAM score at baseline and of being male or female, and analyses of other outcomes such as LSES and CHIP.
Results : A total of 541 of 1920 (28%) lupus patients responded at baseline, 399 at 3 months and 355 at 6 months. At baseline, mean (sd) age = 50.1 (14.2) years, female = 93%, Caucasian = 74%, disease duration = 16.9 (11.9) years and PAM score = 61.1 (13.5). The following subanalyses (Table 1) showed a beneficial effect of MLG on activation after three months in the subgroup of patients with low PAM at baseline, as well as for men. A significant improvement in LSES was also observed after 3 months of exposure to MLG but there was no change in CHIP.
Conclusions : At 3 months, access to MLG improved activation in patients with a low activation at baseline and in men. Self-efficacy also improved significantly without changes in coping strategies. The MLG is a unique web-based resource that provides reliable information for patients with lupus to assist them with disease management and lifestyle adaptations.