title: Living with lupus: a prospective pan-Canadian study.
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 R2 = 0.43).
  
  
  CONCLUSIONS
  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.
authors.affiliation: Division of Clinical Epidemiology, Montreal General Hospital Research Institute, Quebec, Canada. patricia.dobkin@mcgill.ca
authors.forename: P L
authors.initials: PL
authors.lastname: Dobkin
authors.forename: D
authors.initials: D
authors.lastname: Da Costa
authors.forename: P R
authors.initials: PR
authors.lastname: Fortin
authors.forename: S
authors.initials: S
authors.lastname: Edworthy
authors.forename: S
authors.initials: S
authors.lastname: Barr
authors.forename: J M
authors.initials: JM
authors.lastname: Esdaile
authors.forename: J L
authors.initials: JL
authors.lastname: Senécal
authors.forename: J R
authors.initials: JR
authors.lastname: Goulet
authors.forename: D
authors.initials: D
authors.lastname: Choquette
authors.forename: E
authors.initials: E
authors.lastname: Rich
authors.forename: A
authors.initials: A
authors.lastname: Beaulieu
authors.forename: A
authors.initials: A
authors.lastname: Cividino
authors.forename: S
authors.initials: S
authors.lastname: Ensworth
authors.forename: D
authors.initials: D
authors.lastname: Smith
authors.forename: M
authors.initials: M
authors.lastname: Zummer
authors.forename: D
authors.initials: D
authors.lastname: Gladman
authors.forename: A E
authors.initials: AE
authors.lastname: Clarke
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D002170:Canada; D005221:Fatigue / Q000209:etiology*; D005260:Female; D006304:Health Status; D006801:Humans; D008180:Lupus Erythematosus, Systemic / Q000150:complications / Q000503:physiopathology / Q000523:psychology; D008875:Middle Aged; D011446:Prospective Studies; D011788:Quality of Life; D012720:Severity of Illness Index; D012803:Sick Role; D018434:Sickness Impact Profile; D012919:Social Behavior; D012944:Social Support; D011795:Surveys and Questionnaires