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191 MyLupusGuide, a lupus-specific web interactive navigator, improves self-efficacy and activation in patients with low activation and in men
  1. Paul R Fortin1,
  2. Carolyn Neville2,
  3. Anne-Sophie Julien3,
  4. Elham Rahme2,
  5. Murray Rochon4,
  6. Vinita Haroun5,
  7. Evelyne Vinet6,
  8. Christine Peschken7,
  9. Ann E Clarke8,
  10. Janet Pope9,
  11. Stephanie Keeling10,
  12. Antonio Avina-Zubieta11,
  13. Douglas Smith12,
  14. Mark Matsos13,
  15. Marie Hudson14,
  16. Jodie Young5,
  17. Anna-Lisa Morrison5,
  18. Davy Eng1 and
  19. Deborah DaCosta2
  1. 1CHU de Québec – Université Laval
  2. 2McGill University Health Centre Research Institute
  3. 3Université Laval
  4. 4Jack Digital Productions Inc
  5. 5Lupus Interactive Navigator Patient Advisory Committee
  6. 6Department of Medicine, Division of Rheumatology, Faculty of Medicine, McGill University
  7. 7Faculty of Medicine, Department of Internal Medicine, University of Manitoba
  8. 8Division of Rheumatology, Cumming School of Medicine, University of Calgary
  9. 9University of Western Ontario
  10. 10University of Alberta
  11. 11Arthritis Research Canada, Univeristy of British Columbia
  12. 12University of Ottawa
  13. 13McMaster University
  14. 14McGill University


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.

Abstract 191 Table 1

Improvement after three months in patient activation and self-efficacy in subgroup analyses of 541 patients given access to MyLupusGuide (analyses done on pooled groups after a 3 months exposure* to MLG)

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.

Funding Source(s): A Knowledge-to-Action Canadian Institute for Health Research grant. Dr. Fortin holds a Canada Research Chair.

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