‘Not at target’: prevalence and consequences of inadequate disease control in systemic lupus erythematosus—a multinational observational cohort study

Rangi Kandane-Rathnayake, Worawit Louthrenoo, Alberta Hoi, Shue Fen Luo, Yeong Jian J. Wu, Yi Hsing Chen, Jiacai Cho, Aisha Lateef, Laniyati Hamijoyo, Sandra V. Navarra, Leonid Zamora, Sargunan Sockalingam, Yuan An, Zhanguo Li, Yasuhiro Katsumata, Masayoshi Harigai, Yanjie Hao, Zhuoli Zhang, Jun Kikuchi, Tsutomu TakeuchiB. M.D.B. Basnayake, Madelynn Chan, Kristine Pek Ling Ng, Nicola Tugnet, Sunil Kumar, Shereen Oon, Fiona Goldblatt, Sean O’Neill, Kathryn A. Gibson, Naoaki Ohkubo, Yoshiya Tanaka, Sang Cheol Bae, Chak Sing Lau, Mandana Nikpour, Vera Golder, Eric F. Morand, for the Asia Pacific Lupus Collaboration

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4 Citations (Scopus)


Background: The unmet need in systemic lupus erythematosus (SLE) with the current standard of care is widely recognised, but few studies have quantified this. The recent definition of treat-to-target endpoints and other thresholds of uncontrolled disease activity provide an opportunity to formally define unmet need in SLE. In this study, we enumerated the prevalence of these states and examined their association with adverse outcomes. Methods: Data were collected prospectively in a 13-country longitudinal SLE cohort between 2013 and 2019. Unmet need was defined as never attaining lupus low disease activity state (LLDAS), a time-adjusted mean SLEDAI-2K (AMS) > 4, or ever experiencing high disease activity status (HDAS; SLEDAI-2K ≥10). Health-related quality of life (HRQoL) was assessed using SF36 (v2) and damage accrual using the SLICC-ACR SLE Damage Index (SDI). Results: A total of 3384 SLE patients were followed over 30,313 visits (median [IQR] follow-up 2.4 [0.4, 4.3] years). Eight hundred thirteen patients (24%) never achieved LLDAS. Median AMS was 3.0 [1.4, 4.9]; 34% of patients had AMS > 4. Twenty-five per cent of patients had episodes of HDAS. Each of LLDAS-never, AMS>4, and HDAS-ever was strongly associated with damage accrual, higher glucocorticoid use, and worse HRQoL. Mortality was significantly increased in LLDAS-never (adjusted HR [95% CI] = 4.98 [2.07, 12.0], p<0.001) and HDAS-ever (adjusted hazard ratio (HR) [95% CI] = 5.45 [2.75, 10.8], p<0.001) patients. Conclusion: Failure to achieve LLDAS, high average disease activity, and episodes of HDAS were prevalent in SLE and were significantly associated with poor outcomes including organ damage, glucocorticoid exposure, poor quality of life, and mortality.

Original languageEnglish
Article number70
Number of pages10
JournalArthritis Research and Therapy
Issue number1
Publication statusPublished - 2022


  • Disease activity
  • Outcomes
  • Quality of life
  • Systemic lupus erythematosus
  • Unmet need

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