title: A comparison of patients' and physicians' assessments of disease activity using the Swedish version of the Systemic Lupus Activity Questionnaire.
abstract: OBJECTIVE
  We compared patients' assessments of systemic lupus erythematosus (SLE) disease activity by a Swedish version of the Systemic Lupus Activity Questionnaire (SLAQ) with physicians' assessments by the Systemic Lupus Activity Measure (SLAM) and Systemic Lupus Erythematosus Disease Activity Index 2000 (SLEDAI-2K). We also explored the performance of the SLAQ in patients with short (< 1 year) versus long (≥ 1 year) disease duration.
  
  
  METHODS
  Patients filled out the SLAQ before physicians' assessments. Correlations between SLAQ total, subscales (Symptom score, Flares, Patients global) and SLAM and SLEDAI-2K, as well as between the corresponding items in SLAQ and SLAM, were evaluated using Spearman's ρ. Comparisons between patients with different disease durations were performed with Mann-Whitney U or chi-squared tests.
  
  
  RESULTS
  We included 203 patients (79% women), with a median age of 45 years [interquartile range (IQR) 33-57 years] and disease duration of 5 years (IQR 0-14 years). Correlations between physicians' SLAM without laboratory items (SLAM-nolab) and patients' assessments were: SLAQ total, ρ = 0.685, Symptom score, ρ = 0.651, Flares, ρ = 0.547, and Patients global, ρ = 0.600. Of the symptom items, fatigue (ρ = 0.640), seizures (ρ = 0.635), and headache (ρ = 0.604) correlated most closely. Neurology/stroke syndrome, skin, and lymphadenopathy correlated less well (ρ < 0.24). Patients' and physicians' assessments were notably more discordant for patients with short disease durations.
  
  
  CONCLUSIONS
  We confirm that the SLAQ can be used to monitor disease activity. However, the discrepancy between patients' and physicians' assessments was greater for patients with short versus long disease duration. We encourage further use of the SLAQ, but would like to develop a shorter version which would be valuable in modern, partly web-based, clinical care.
authors.affiliation: a Rheumatology Clinic , Karolinska University Hospital , Stockholm , Sweden.|b Division of Physiotherapy, Department of Neurobiology, Care Sciences and Society , Karolinska Institutet , Stockholm , Sweden.
authors.forename: S
authors.initials: S
authors.lastname: Pettersson
authors.affiliation: a Rheumatology Clinic , Karolinska University Hospital , Stockholm , Sweden.|c Rheumatology Unit, Department of Medicine , Karolinska Institutet, Solna , Stockholm , Sweden.
authors.forename: E
authors.initials: E
authors.lastname: Svenungsson
authors.affiliation: a Rheumatology Clinic , Karolinska University Hospital , Stockholm , Sweden.|c Rheumatology Unit, Department of Medicine , Karolinska Institutet, Solna , Stockholm , Sweden.
authors.forename: J
authors.initials: J
authors.lastname: Gustafsson
authors.affiliation: a Rheumatology Clinic , Karolinska University Hospital , Stockholm , Sweden.
authors.forename: S
authors.initials: S
authors.lastname: Möller
authors.affiliation: a Rheumatology Clinic , Karolinska University Hospital , Stockholm , Sweden.|c Rheumatology Unit, Department of Medicine , Karolinska Institutet, Solna , Stockholm , Sweden.
authors.forename: I
authors.initials: I
authors.lastname: Gunnarsson
authors.affiliation: a Rheumatology Clinic , Karolinska University Hospital , Stockholm , Sweden.|d Division of Nursing, Department of Neurobiology Care Sciences and Society , Karolinska Institutet , Stockholm , Sweden.|e Division of Nursing Science, Department of Medical and Health Sciences , Linköping University , Linköping , Sweden.
authors.forename: E
authors.initials: E
authors.lastname: Welin Henriksson
mesh_terms: D000328:Adult; D018450:Disease Progression; D005221:Fatigue / Q000209:etiology / Q000503:physiopathology*; D005260:Female; D006261:Headache / Q000209:etiology / Q000503:physiopathology*; D006801:Humans; D008178:Lupus Erythematosus, Cutaneous / Q000209:etiology / Q000503:physiopathology; D008180:Lupus Erythematosus, Systemic / Q000150:complications / Q000503:physiopathology*; D020945:Lupus Vasculitis, Central Nervous System / Q000150:complications / Q000503:physiopathology; D000072281:Lymphadenopathy / Q000209:etiology / Q000503:physiopathology; D008297:Male; D008875:Middle Aged; D000071066:Patient Reported Outcome Measures; D012640:Seizures / Q000209:etiology / Q000503:physiopathology*; D012720:Severity of Illness Index; D020521:Stroke / Q000209:etiology / Q000503:physiopathology; D011795:Surveys and Questionnaires; D013548:Sweden