Abstract
This chapter explores advantages and disadvantages of using outcome metrics to clinically monitor patients with systemic lupus erythematosus (SLE) in clinical practice. Advantages include regular objective assessments of disease activity and damage along with prognostic assessments of morbidity and mortality. Disadvantages include administrative burden and the time commitment necessary to carry out the instruments. We also review current guidelines that recommend patient assessments using validated instruments of disease activity and validated disease damage metrics. We also provide an overview of several validated disease activity and damage metrics including the SLEDAI, SLAM, SLE-DAS, and BILAG.
Access this chapter
Tax calculation will be finalised at checkout
Purchases are for personal use only
References
Keeling SO, Vandermeer B, Medina J, Chatterley T, Nevskaya T, Pope J, et al. Measuring disease activity and damage with validated metrics: a systematic review on mortality and damage in systemic lupus erythematosus. J Rheumatol. 2018;45(10):1448–61.
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(3):309–18.
Keeling SO, Bissonauth A, Bernatsky S, Vandermeer B, Fortin PR, Gladman DD, et al. Practice variations in the diagnosis, monitoring, and treatment of systemic lupus erythematosus in Canada. J Rheumatol. 2018;45(10):1440–7.
Mikdashi J, Nived O. Measuring disease activity in adults with systemic lupus erythematosus: the challenges of administrative burden and responsiveness to patient concerns in clinical research. Arthritis Res Ther. 2015;17:183.
Keeling SO, Alabdurubalnabi Z, Avina-Zubieta A, Barr S, Bergeron L, Bernatsky S, et al. Canadian Rheumatology Association recommendations for the assessment and monitoring of systemic lupus erythematosus. J Rheumatol. 2018;45(10):1426–39.
Fanouriakis A, Kostopoulou M, Alunno A, Aringer M, Bajema I, Boletis JN, et al. 2019 update of the EULAR recommendations for the management of systemic lupus erythematosus. Ann Rheum Dis. 2019;78(6):736–45.
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(6):630–40.
Gladman DD, Ibañez D, Urowitz MB. Systemic lupus erythematosus disease activity index 2000. J Rheumatol. 2002;29(2):288–91.
Touma Z, Urowitz MB, Ibañez D, Gladman DD. SLEDAI-2K 10 days versus SLEDAI-2K 30 days in a longitudinal evaluation. Lupus. 2011;20(1):67–70.
Petri M, Kim MY, Kalunian KC, Grossman J, Hahn BH, Sammaritano LR, et al. Combined oral contraceptives in women with systemic lupus erythematosus. N Engl J Med. 2005;353(24):2550–8.
Buyon JP, Petri MA, Kim MY, Kalunian KC, Grossman J, Hahn BH, et al. The effect of combined estrogen and progesterone hormone replacement therapy on disease activity in systemic lupus erythematosus: a randomized trial. Ann Intern Med. 2005;142(12 Pt 1):953–62.
Touma Z, Gladman DD, Ibañez D, Urowitz MB. Development and initial validation of the systemic lupus erythematosus disease activity index 2000 responder index 50. J Rheumatol. 2011;38(2):275–84.
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(9):1107–18.
Bae SC, Koh HK, Chang DK, Kim MH, Park JK, Kim SY. Reliability and validity of systemic lupus activity measure-revised (SLAM-R) for measuring clinical disease activity in systemic lupus erythematosus. Lupus. 2001;10(6):405–9.
Jesus D, Matos A, Henriques C, Zen M, Larosa M, Iaccarino L, et al. Derivation and validation of the SLE Disease Activity Score (SLE-DAS): a new SLE continuous measure with high sensitivity for changes in disease activity. Ann Rheum Dis. 2019;78(3):365–71.
Hay EM, Bacon PA, Gordon C, Isenberg DA, Maddison P, Snaith ML, et al. The BILAG index: a reliable and valid instrument for measuring clinical disease activity in systemic lupus erythematosus. Q J Med. 1993;86(7):447–58.
Yee CS, Cresswell L, Farewell V, Rahman A, Teh LS, Griffiths B, et al. Numerical scoring for the BILAG-2004 index. Rheumatology (Oxford). 2010;49(9):1665–9.
Albrecht J, Taylor L, Berlin JA, Dulay S, Ang G, Fakharzadeh S, et al. The CLASI (Cutaneous Lupus Erythematosus Disease Area and Severity Index): an outcome instrument for cutaneous lupus erythematosus. J Invest Dermatol. 2005;125(5):889–94.
Furie RA, Petri MA, Wallace DJ, Ginzler EM, Merrill JT, Stohl W, et al. Novel evidence-based systemic lupus erythematosus responder index. Arthritis Rheum. 2009;61(9):1143–51.
Thanou A, Chakravarty E, James JA, Merrill JT. Which outcome measures in SLE clinical trials best reflect medical judgment? Lupus Sci Med. 2014;1(1):e000005.
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(3):363–9.
Petri M, Purvey S, Fang H, Magder LS. Predictors of organ damage in systemic lupus erythematosus: the Hopkins Lupus Cohort. Arthritis Rheum. 2012;64(12):4021–8.
Yazdany J, Trupin L, Gansky SA, Dall'era M, Yelin EH, Criswell LA, et al. Brief index of lupus damage: a patient-reported measure of damage in systemic lupus erythematosus. Arthritis Care Res (Hoboken). 2011;63(8):1170–7.
Katz P, Trupin L, Rush S, Yazdany J. Longitudinal validation of the Brief Index of Lupus Damage. Arthritis Care Res (Hoboken). 2014;66(7):1057–62.
Author information
Authors and Affiliations
Corresponding author
Editor information
Editors and Affiliations
Rights and permissions
Copyright information
© 2021 Springer Nature Switzerland AG
About this chapter
Cite this chapter
Gupta, A., Pope, J., Touma, Z., Keeling, S. (2021). Metrics and Outcomes of Systemic Lupus Erythematosus in Clinical Practice. In: Touma, Z. (eds) Outcome Measures and Metrics in Systemic Lupus Erythematosus. Springer, Cham. https://doi.org/10.1007/978-3-030-73303-2_19
Download citation
DOI: https://doi.org/10.1007/978-3-030-73303-2_19
Published:
Publisher Name: Springer, Cham
Print ISBN: 978-3-030-73302-5
Online ISBN: 978-3-030-73303-2
eBook Packages: MedicineMedicine (R0)