Impact of adherence to EULAR quality indicators on the quality of life of patients with systemic lupus erythematosus

Published:December 28, 2022DOI:


      • Impaired quality of life in SLE can be of greater concern from the patient's perspective than disease activity assessed by the physician.
      • Adherence to EULAR-based QIs by physicians does not suffice to provide a favorable impact on the quality of life of SLE patients.
      • An integrated disease modification approach, based on disease activity indices and subjective patients’ wellness, should be considered as primary end point in clinical trials.



      Quality indicators (QIs) for systemic lupus erythematosus (SLE) management based on the 2019 update of European League Against Rheumatism (EULAR) recommendations have been recently proposed. We aimed to determine whether adherence to QIs was associated with patient reported outcome (PRO).


      Adherence to a set of 18 EULAR-based QIs and correlation with PRO assessed by Lupus Impact Tracker (LIT) was tested in a cohort of 162 SLE patients.


      On average, SLE patients received 41% (33; 52.5) of recommended care. Higher adherence to monitoring-related QIs was associated with an older age, a shorter SLE disease duration and a more severe disease (i.e. Class III/IV/V nephritis). LIT demonstrated that the average impact of lupus on patients’ life was of 30% (12.5;47.5). In multivariable analysis, patients of female gender (OR 0.25, 95% 0.05–0.94; p = 0.05), with lupus CNS (OR 0.33, 95%CI 0.08–1.05; p = 0.08) and skin involvements (OR 0.49, 95%CI 0.23–1.04; p = 0.07) had higher odds of experiencing a negative impact of the lupus on their life. No association were found between adherences to QIs by physicians and reported quality of life in lupus patients.


      Our study confirms a variable degree of clinicians’ adherence to QIs for SLE and shows no clear association between QIs adherence and patient reported outcome. Adherence to QIs by physicians are not enough to impact the quality of life of patients.


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        • Lazar S.
        • Kahlenberg J.M.
        Systemic Lupus Erythematosus: new Diagnostic and Therapeutic Approaches.
        Annu Rev Med. 2022; ([published online ahead of print, 2022 Jul 8])
        • Fanouriakis A.
        • Kostopoulou M.
        • Cheema K.
        • et al.
        2019 Update of the Joint European League Against Rheumatism and European Renal Association-European Dialysis and Transplant Association (EULAR/ERA-EDTA) recommendations for the management of lupus nephritis.
        Ann Rheum Dis. 2020; 79: 713-723
        • Fanouriakis A.
        • Kostopoulou M.
        • Alunno A.
        • et al.
        2019 update of the EULAR recommendations for the management of systemic lupus erythematosus.
        Ann Rheum Dis. 2019; 78: 736-745
        • Chavatza K.
        • Kostopoulou M.
        • Nikolopoulos D.
        • et al.
        Quality indicators for systemic lupus erythematosus based on the 2019 EULAR recommendations: development and initial validation in a cohort of 220 patients.
        Ann Rheum Dis. 2021; 80: 1175-1182
        • Alarcón G.S.
        • McGwin Jr, G.
        • Brooks K.
        • et al.
        Systemic lupus erythematosus in three ethnic groups. XI. Sources of discrepancy in perception of disease activity: a comparison of physician and patient visual analog scale scores.
        Arthritis Rheum. 2002; 47: 408-413
        • Roussotte M.
        • Gerfaud-Valentin M.
        • Hot A.
        • et al.
        Immune thrombocytopenia with clinical significance in systemic lupus erythematosus: a retrospective cohort study of 90 patients.
        Rheumatology (Oxford). 2021; ([published online ahead of print, 2021 Dec 16]): keab925
        • Bradbury C.A.
        • Pell J.
        • Hill Q.
        • et al.
        Mycophenolate Mofetil for First-Line Treatment of Immune Thrombocytopenia.
        N Engl J Med. 2021; 385: 885-895
        • Aringer M.
        • Costenbader K.
        • Daikh D.
        • et al.
        2019 European League Against Rheumatism/American College of Rheumatology classification criteria for systemic lupus erythematosus.
        Ann Rheum Dis. 2019; 78: 1151-1159
        • Schneider M.
        • Mosca M.
        • Pego-Reigosa J.M.
        • et al.
        Cross-cultural validation of Lupus Impact Tracker in five European clinical practice settings.
        Rheumatology (Oxford). 2017; 56: 818-828
        • Jolly M.
        • Garris C.P.
        • Mikolaitis R.A.
        • et al.
        Development and validation of the Lupus Impact Tracker: a patient-completed tool for clinical practice to assess and monitor the impact of systemic lupus erythematosus.
        Arthritis Care Res (Hoboken). 2014; 66: 1542-1550
        • Serre J.
        • François C.
        • der Haegen M.C.V.
        • Papo T.
        • Goulenok T.
        • Sacre K.
        Nurse-led vaccination program dramatically improves pneumococcal vaccination coverage among patients with autoimmune inflammatory disorders.
        Eur J Intern Med. 2017; 43: e43-e45
        • Franklyn K.
        • Lau C.S.
        • Navarra S.V.
        • et al.
        Definition and initial validation of a Lupus Low Disease Activity State (LLDAS).
        Ann Rheum Dis. 2016; 75: 1615-1621
        • Ugarte-Gil M.F.
        • Gamboa-Cardenas R.V.
        • Reátegui-Sokolova C.
        • et al.
        LLDAS (lupus low disease activity state) and/or remission are associated with less damage accrual in patients with systemic lupus erythematosus from a primarily Mestizo population: data from the Almenara Lupus Cohort.
        Lupus Sci Med. 2022; 9e000616
        • Kikuchi J.
        • Hanaoka H.
        • Saito S.
        • et al.
        Lupus low disease activity state within 12 months is associated with favourable outcomes in severely active systemic lupus erythematosus.
        Rheumatology (Oxford). 2022; ([published online ahead of print, 2022 Jan 7]): keac002
        • van Vollenhoven R.
        • Askanase A.D.
        • Bomback A.S.
        • et al.
        Conceptual framework for defining disease modification in systemic lupus erythematosus: a call for formal criteria.
        Lupus Sci Med. 2022; 9e000634
        • Yen J.C.
        • Abrahamowicz M.
        • Dobkin P.L.
        • Clarke A.E.
        • Battista R.N.
        • Fortin P.R.
        Determinants of discordance between patients and physicians in their assessment of lupus disease activity.
        J Rheumatol. 2003; 30: 1967-1976
        • Leong K.P.
        • Chong E.Y.
        • Kong K.O.
        • et al.
        Discordant assessment of lupus activity between patients and their physicians: the Singapore experience.
        Lupus. 2010; 19: 100-106
        • Eudy A.M.
        • Reeve B.B.
        • Coles T.
        • et al.
        The use of patient-reported outcome measures to classify type 1 and 2 systemic lupus erythematosus activity.
        Lupus. 2022; 31: 697-705
        • Stamm T.A.
        • Bauernfeind B.
        • Coenen M.
        • et al.
        Concepts important to persons with systemic lupus erythematosus and their coverage by standard measures of disease activity and health status.
        Arthritis Rheum. 2007; 57: 1287-1295