Living with lupus: A prospective Pan-Canadian study

Objective. To portray life with lupus for women affected by this disease an d to identify predictors of fatigue, a common symptom that compromises pati ents' quality of life. Methods. A sample of 120 female patients (mean age 42.5 yrs) with systemic lupus erythematosus (SLE) from 9 rheumatology clinics across Canada were fo llowed prospectively for 15 months. Assessments of psychosocial functioning took place at baseline, and at 3, 9, and 15 months. Physician examinations were conducted at baseline and 15 months. Results. Significant time effects were found for: global psychological dist ress (p < 0.001), stress (p < 0.01), emotion-oriented coping (p < 0.001), p hysical health status (p < 0.001). and fatigue (p < < 0.01), indicating tha t patients improved from baseline to 15 months. Disease activity worsened f or 40.3%, improved for 50.8%, and remained the same for 8.8% of the patient s from baseline to 15 months. Controlling for baseline disease activity and fatigue. and considering sleep problems, decreases in stress and depressio n predicted less fatigue at 15 months (p < 0.001, adjusted R-2 = 0.43). Conclusion. Despite fluctuations in disease activity, patients with SLE, as a group. cope adequately with their disease over time. There is, nonethele ss, a subset of patients (about 40%) who remain distressed and who may bene fit from psychosocial interventions.