The Journal of Rheumatology 2001; 28:11 2442 From the Division of Clinical Epidemiology, Montreal General Hospital Research Institute, and McGill University, Montreal, Quebec, Canada. Funded by the National Health and Research Development Program — Grant 6605-5080-11. Pilot work pertaining to the study was funded by McGill University and Lupus Quebec. P.L. Dobkin, PhD; D. Da Costa, PhD; P.R. Fortin, MD, MPH; A.E. Clarke, MD, MSc, Division of Clinical Epidemiology, Montreal General Hospital Research Institute, and Department of Medicine, McGill University; S. Edworthy, MD; S. Barr, MD, Department of Medicine, University of Calgary, Calgary, Alberta; J.M. Esdaile, MD, MPH, Division of Rheumatology, Vancouver Hospital, and Arthritis Research Centre of Canada, University of British Columbia, Vancouver, British Columbia; J-L. Senécal, MD; J-R. Goulet, MD; D. Choquette, MD; E. Rich, MD, Division of Rheumatology, Hôpital Nôtre-Dame, Montreal, Quebec; A. Beaulieu, MD, Division of Rheumatology, Centre Hospitalier de l’Université Laval, Quebec, Quebec; A. Cividino, MD, Division of Rheumatology, McMaster University, Hamilton, Ontario; S. Ensworth, MD, Division of Rheumatology, Vancouver Hospital, Vancouver, British Columbia; D. Smith, MD, Rheumatic Diseases Unit, Ottawa General Hospital, Ottawa, Ontario; M. Zummer, MD, Division of Rheumatology, Hôpital Maisonneuve-Rosemont, Montreal; D. Gladman, MD, Centre for Prognosis Studies in Rheumatic Diseases, Toronto Hospital, Toronto, Ontario. Address reprint requests to Dr. P.L. Dobkin, Division of Clinical Epidemiology, Montreal General Hospital, 1650 Cedar Ave., Montreal, Quebec H3G 1A4, Canada. E-mail: patricia.dobkin@mcgill.ca Submitted September 15, 2000; revision accepted June 5, 2001. Systemic lupus erythematosus (SLE) affects primarily young women and is estimated to occur in as much as 0.1% of the population 1 . For many patients, the disease, compounded by the unpredictability of exacerbations, symptomatology, and response to therapy, results in consid- erable physical disability and psychological distress. The mental health of patients with SLE, although of considerable importance 2,3 , has traditionally been underappreciated and poorly understood. Patients may experience secondary psychiatric disorders, acute confusional states, cognitive deficits, and mood disorders due to SLE (e.g., depressive, manic, and mixed disturbances) 4 . Because there are multiple causes for neuropsychiatric symptomatology due to SLE, its prevalence is uncertain. For example, neuropsychiatric abnormalities may reflect direct effects of the illness (e.g., acute inflammatory polyradiculoneuropathy, seizures) or side effects of medications used to treat SLE (e.g., pred- nisone). Yet, given the correlational nature of most data reported, it is impossible to determine whether psychosocial problems preceded or were precipitated by the illness itself. In addition, the methodological weaknesses of the various studies 2,3 , i.e., small, unrepresentative samples, retrospec- tive research designs, failure to use standardized measures, and poor or no comparison groups, render the conclusions pertaining to prevalence rates of psychiatric disorders in SLE tentative 5 . Clinicians and patients note that taxing events or experi- ences (i.e., stress) appear to provoke exacerbations of SLE physical symptoms. Wekking, et al 6 explored this relation- ship in a small sample of patients with SLE. They found a significant relationship between daily experiences consid- ered to be stressful and illness-related variables (e.g., renal Living with Lupus: A Prospective Pan-Canadian Study PATRICIA L. DOBKIN, DEBORAH DA COSTA, PAUL R. FORTIN, STEVEN EDWORTHY, SUSAN BARR, JOHN M. ESDAILE, JEAN-LUC SENÉCAL, JEAN-RICHARD GOULET, DENIS CHOQUETTE, ERIC RICH, ANDRÉ BEAULIEU, ALFRED CIVIDINO, STEPHANIE ENSWORTH, DOUG SMITH, MICHAEL ZUMMER, DAFNA GLADMAN, and ANN E. CLARKE ABSTRACT. Objective. To portray life with lupus for women affected by this disease and to identify predictors of fatigue, a common symptom that compromises patients’ 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 followed 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 distress (p < 0.001), stress (p < 0.01), emotion-oriented coping (p < 0.001), physical health status (p < 0.001), and fatigue (p < 0.001), indicating that patients improved from baseline to 15 months. Disease activity worsened for 40.3%, improved for 50.8%, and remained the same for 8.8% of the patients from baseline to 15 months. Controlling for baseline disease activity and fatigue, and considering sleep problems, decreases in stress and depression 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, nonetheless, a subset of patients (about 40%) who remain distressed and who may benefit from psychosocial interventions. (J Rheumatol 2001;28:2442–8) Key Indexing Terms: SYSTEMIC LUPUS ERYTHEMATOSUS HEALTH STATUS PSYCHOSOCIAL PROSPECTIVE STUDY Personal non-commercial use only. The Journal of Rheumatology Copyright © 2001. All rights reserved. www.jrheum.org Downloaded on September 15, 2021 from