Measuring the Impact of MyLupusGuide in Canada: Results of a Randomized Controlled Study

Objective This study was undertaken to assess the effects of a web‐based program, MyLupusGuide , developed to facilitate self‐management in systemic lupus erythematosus (SLE). Methods In this randomized controlled online study, participants received either immediate access to the MyLupusGuide site or delayed access starting on month 3. The primary outcome was the patient activation measure (PAM) score. Secondary outcomes included measurements of health status, self‐efficacy, coping, perceived patient–physician relationship, and medication adherence. Outcomes were measured at the baseline visit and at the 3‐month and 6‐month follow‐up visits. We used linear mixed modeling to compare PAM scores between the 2 groups at months 3 and 6. Results There were 541 participants included in this study. The mean ± SE age was 50 ± 14 years; 93% were female and 74% were White. The mean ± SE disease duration was 17 ± 12 years, and 56% visited MyLupusGuide at least once. The baseline mean ± SE PAM score was 61.2 ± 13, with 36% scoring low for perceived self‐management skills. After 3 months of exposure to MyLupusGuide, there were no differences in terms of PAM scores between groups. In exploratory analyses, we found significant improvement in PAM scores in those who had low PAM scores at baseline and in male individuals. We observed significant improvements in self‐efficacy before and after access to MyLupusGuide and delayed improvements at month 6 compared to month 3 in terms of mental health and emotional coping. Conclusion MyLupusGuide increases self‐efficacy but not patient activation. A total of 56% of participants visited the MyLupusGuide site during the study period. Individuals with lupus need support to become activated toward self‐management behaviors.