A comparison of patients’ and physicians’ assessments of disease activity using the Swedish version of the Systemic Lupus Activity Questionnaire

References

• D’Cruz DP, Khamashta MA, Hughes GR. Systemic lupus erythematosus. Lancet 2007;369:587–96.
   PubMed Web of Science ®Google Scholar
• Ceccarelli F, Perricone C, Massaro L, Cipriano E, Alessandri C, Spinelli FR, et al. Assessment of disease activity in systemic lupus erythematosus: lights and shadows. Autoimmun Rev 2015;14:601–8.
   PubMed Web of Science ®Google Scholar
• Liang MH, Socher SA, Roberts WN, Esdaile JM. Measurement of systemic lupus erythematosus activity in clinical research. Arthritis Rheum 1988;31:817–25.
   PubMed Web of Science ®Google Scholar
• Liang MH, Socher SA, Larson MG, Schur PH. Reliability and validity of six systems for the clinical assessment of disease activity in systemic lupus erythematosus. Arthritis Rheum 1989;32:1107–18.
   PubMed Web of Science ®Google Scholar
• Bombardier C, Gladman DD, Urowitz MB, Caron D, Chang CH. Derivation of the SLEDAI. A disease activity index for lupus patients. The Committee on Prognosis Studies in SLE. Arthritis Rheum 1992;35:630–40.
   PubMed Web of Science ®Google Scholar
• Gladman DD, Ibañez D, Urowitz MB. Systemic lupus erythematosus disease activity index 2000. J Rheumatol 2002;29:288–91.
   PubMed Web of Science ®Google Scholar
• American College of Rheumatology Ad Hoc Committee on Systemic Lupus Erythematosus Response Criteria. The American College of Rheumatology response criteria for systemic lupus erythematosus clinical trials: measures of overall disease activity. Arthritis Rheum 2004;50:3418–26.
   PubMed Web of Science ®Google Scholar
• Symmons DP, Coppock JS, Bacon PA, Bresnihan B, Isenberg DA, Maddison P, et al. Development and assessment of a computerized index of clinical disease activity in systemic lupus erythematosus. Members of the British Isles Lupus Assessment Group (BILAG). Q J Med 1988;69:927–37.
   PubMedGoogle Scholar
• Nuttall A, Isenberg DA. Assessment of disease activity, damage and quality of life in systemic lupus erythematosus: new aspects. Best Pract Res Clin Rheumatol 2013;27:309–18.
   PubMed Web of Science ®Google Scholar
• Chang E, Abrahamowicz M, Ferland D, Fortin PR. Comparison of the responsiveness of lupus disease activity measures to changes in systemic lupus erythematosus activity relevant to patients and physicians. J Clin Epidemiol 2002;55:488–97.
   PubMed Web of Science ®Google Scholar
• Ward MM, Marx AS, Barry NN. Comparison of the validity and sensitivity to change of 5 activity indices in systemic lupus erythematosus. J Rheumatol 2000;27:664–70.
   PubMed Web of Science ®Google Scholar
• Karlson EW, Daltroy LH, Rivest C, Ramsey-Goldman R, Wright EA, Partridge AJ, et al. Validation of a Systemic Lupus Activity Questionnaire (SLAQ) for population studies. Lupus 2003;12:280–6.
   PubMed Web of Science ®Google Scholar
• Flower CH, Hennis AJ, Liang MH. Report of an international symposium on narrowing the gap in the treatment and study of SLE worldwide: minimum best practices in the management and monitoring of moderate to severe SLE and improving outcomes in constrained environments. Curr Rev Musculoskelet Med 2011;4:105–12.
   PubMedGoogle Scholar
• Yazdany J, Yelin EH, Panopalis P, Trupin L, Julian L, Katz PP. Validation of the systemic lupus erythematosus activity questionnaire in a large observational cohort. Arthritis Rheum 2008;59:136–43.
   PubMed Web of Science ®Google Scholar
• Costenbader KH, Karlson EW, Gall V, de Pablo P, Finckh A, Lynch M, et al. Barriers to a trial of atherosclerosis prevention in systemic lupus erythematosus. Arthritis Rheum 2005;53:718–23.
   PubMed Web of Science ®Google Scholar
• Lee C, Almagor O, Dunlop DD, Manzi S, Spies S, Chadha AB, et al. Disease damage and low bone mineral density: an analysis of women with systemic lupus erythematosus ever and never receiving corticosteroids. Rheumatology (Oxford) 2006;45:53–60.
   PubMed Web of Science ®Google Scholar
• Trupin L, Tonner MC, Yazdany J, Julian LJ, Criswell LA, Katz PP, et al. The role of neighborhood and individual socioeconomic status in outcomes of systemic lupus erythematosus. J Rheumatol 2008;35:1782–8.
   PubMed Web of Science ®Google Scholar
• Chehab G, Richter J, Sander O, Fischer-Betz R, Ostendorf B, Al-Neyadi T, et al. Validation and evaluation of the German version of the Systemic Lupus Activity Questionnaire (SLAQ). Clin Exp Rheumatol 2015;33:354–9.
   PubMed Web of Science ®Google Scholar
• Okamoto Y, Katsumata Y, Baba S, Kawaguchi Y, Gono T, Hanaoka M, et al. Validation of the Japanese version of the Systemic Lupus Activity Questionnaire that includes physician-based assessments in a large observational cohort. Lupus 2016;25:486–95.
   PubMed Web of Science ®Google Scholar
• Tan EM, Cohen AS, Fries JF, Masi AT, McShane DJ, Rothfield NF, et al. The 1982 revised criteria for the classification of systemic lupus erythematosus. Arthritis Rheum 1982;25:1271–7.
   PubMed Web of Science ®Google Scholar
• Hochberg MC. Updating the American College of Rheumatology revised criteria for the classification of systemic lupus erythematosus. Arthritis Rheum 1997;40:1725.
   PubMed Web of Science ®Google Scholar
• Persson LO, Karlsson J, Bengtsson C, Steen B, Sullivan M. The Swedish SF-36 Health Survey II. Evaluation of clinical validity: results from population studies of elderly and women in Gothenborg. J Clin Epidemiol 1998;51:1095–103.
   PubMed Web of Science ®Google Scholar
• Sullivan M, Karlsson J, Ware JE Jr.. The Swedish SF-36 Health Survey–I. Evaluation of data quality, scaling assumptions, reliability and construct validity across general populations in Sweden. Soc Sci Med 1995;41:1349–58.
   PubMed Web of Science ®Google Scholar
• Sullivan M, Karlsson J. The Swedish SF-36 Health Survey III. Evaluation of criterion-based validity: results from normative population. J Clin Epidemiol 1998;51:1105–13.
   PubMed Web of Science ®Google Scholar
• Gladman D, Ginzler E, Goldsmith C, Fortin P, Liang M, Urowitz M, et al. The development and initial validation of the Systemic Lupus International Collaborating Clinics/American College of Rheumatology damage index for systemic lupus erythematosus. Arthritis Rheum 1996;39:363–9.
   PubMed Web of Science ®Google Scholar
• Gladman DD, Urowitz MB, Goldsmith CH, Fortin P, Ginzler E, Gordon C, et al. The reliability of the Systemic Lupus International Collaborating Clinics/American College of Rheumatology Damage Index in patients with systemic lupus erythematosus. Arthritis Rheum 1997;40:809–13.
   PubMed Web of Science ®Google Scholar
• DeVon HA, Block ME, Moyle-Wright P, Ernst DM, Hayden SJ, Lazzara DJ, et al. A psychometric toolbox for testing validity and reliability. J Nurs Scholarsh 2007;39:155–64.
   PubMed Web of Science ®Google Scholar
• Colton T. Statistics in medicine. Boston: Little, Brown. 1974.
   Google Scholar
• Leong KP, Chong EY, Kong KO, Chan SP, Thong BY, Lian TY, et al. Discordant assessment of lupus activity between patients and their physicians: the Singapore experience. Lupus 2010;19:100–6.
   PubMed Web of Science ®Google Scholar
• Yen JC, Abrahamowicz M, Dobkin PL, Clarke AE, Battista RN, Fortin PR. Determinants of discordance between patients and physicians in their assessment of lupus disease activity. J Rheumatol 2003;30:1967–76.
   PubMed Web of Science ®Google Scholar
• Waldheim E, Elkan AC, Bergman S, Frostegård J, van Vollenhoven R, Henriksson EW. Extent and characteristics of self-reported pain in patients with systemic lupus erythematosus. Lupus 2013;22:136–43.
   PubMed Web of Science ®Google Scholar
• Neville C, Clarke AE, Joseph L, Belisle P, Ferland D, Fortin PR. Learning from discordance in patient and physician global assessments of systemic lupus erythematosus disease activity. J Rheumatol 2000;27:675–9.
   PubMed Web of Science ®Google Scholar
• Atkinson MJ, Lennox RD. Extending basic principles of measurement models to the design and validation of Patient Reported Outcomes. Health Qual Life Outcomes 2006;4:65.
   PubMed Web of Science ®Google Scholar
• Pettersson S, Lövgren M, Eriksson LE, Moberg C, Svenungsson E, Gunnarsson I, et al. An exploration of patient-reported symptoms in systemic lupus erythematosus and the relationship to health-related quality of life. Scand J Rheumatol 2012;41:383–90.
   PubMed Web of Science ®Google Scholar
• Collins D. Pretesting survey instruments: an overview of cognitive methods. Qual Life Res 2003;12:229–38.
   PubMed Web of Science ®Google Scholar
• Vikerfors A, Johansson AB, Gustafsson JT, Jönsen A, Leonard D, Zickert A, et al. Clinical manifestations and anti-phospholipid antibodies in 712 patients with systemic lupus erythematosus: evaluation of two diagnostic assays. Rheumatology (Oxford) 2013;52:501–9.
   PubMed Web of Science ®Google Scholar
• Hanly JG, Hong C, Smith S, Fisk JD. A prospective analysis of cognitive function and anticardiolipin antibodies in systemic lupus erythematosus. Arthritis Rheum 1999;42:728–34.
   PubMed Web of Science ®Google Scholar
• Ainiala H, Loukkola J, Peltola J, Korpela M, Hietaharju A. The prevalence of neuropsychiatric syndromes in systemic lupus erythematosus. Neurology 2001;57:496–500.
   PubMed Web of Science ®Google Scholar
• Nowicka-Sauer K, Czuszynska Z, Smolenska Z, Siebert J. Neuropsychological assessment in systemic lupus erythematosus patients: clinical usefulness of first-choice diagnostic tests in detecting cognitive impairment and preliminary diagnosis of neuropsychiatric lupus. Clin Exp Rheumatol 2011;29:299–306.
   PubMed Web of Science ®Google Scholar
• Grönhagen CM, Gunnarsson I, Svenungsson E, Nyberg F. Cutaneous manifestations and serological findings in 260 patients with systemic lupus erythematosus. Lupus 2010;19:1187–94.
   PubMed Web of Science ®Google Scholar
• Quimby KR, Flower C, Hambleton IR, Landis RC, Hennis AJ. Comparison of the systemic lupus erythematosus activity questionnaire and the systemic lupus erythematosus disease activity index in a black Barbadian population. Int J Rheumatol 2013;2013:875369.
   PubMedGoogle Scholar