• Hervé Devilliers, Zahir Amoura, Jean-François Besancenot, Bernard Bonnotte, Jean-Louis Pasquali, Denis Wahl, Francois Maurier, Pierre Kaminsky, Jean-Loup Pennaforte, Nadine Magy-Bertrand, Laurent Arnaud, Christine Binquet, Francis Guillemin, and Claire Bonithon-Kopp.
• Department of Internal Medicine and Systemic Diseases, University Hospital of Dijon, Clinical Investigation Centre, University Hospital of Dijon, Dijon, Department of Internal Medicine, University Hospital Pitié-Salpêtrière, Paris, Department of Internal Medicine and Clinical Immunology, University Hospital of Dijon, Dijon, Clinical Immunology Department, University Hospital of Strasbourg, Strasbourg, Department of Vascular Medicine, University Hospital of Nancy, Vandoeuvre-lès-Nancy, Department of Internal Medicine, Vascular Medicine and Clinical Immunology, Ste Blandine Hospital, Metz, Department of Internal Medicine Systemic Diseases and Rare Diseases, University Hospital of Nancy, Vandoeuvre-lès-Nancy, Department of Internal Medicine, University Hospital Robert Debré, Reims, Department of Internal Medicine, University Hospital Jean Minjoz, Besançon and Clinical Epidemiology and Evaluation Department, University Hospital, Nancy, France Department of Internal Medicine and Systemic Diseases, University Hospital of Dijon, Clinical Investigation Centre, University Hospital of Dijon, Dijon, Department of Internal Medicine, University Hospital Pitié-Salpêtrière, Paris, Department of Internal Medicine and Clinical Immunology, University Hospital of Dijon, Dijon, Clinical Immunology Department, University Hospital of Strasbourg, Strasbourg, Department of Vascular Medicine, University Hospital of Nancy, Vandoeuvre-lès-Nancy, Department of Internal Medicine, Vascular Medicine and Clinical Immunology, Ste Blandine Hospital, Metz, Department of Internal Medicine Systemic Diseases and Rare Diseases, University Hospital of Nancy, Vandoeuvre-lès-Nancy, Department of Internal Medicine, University Hospital Robert Debré, Reims, Department of Internal Medicine, University Hospital Jean Minjoz, Besançon and Clinical Epidemiology and Evaluation Department, University Hospital, Nancy, France hervedevilliers@free.fr.
• Rheumatology (Oxford). 2015 May 1; 54 (5): 940-9.

ObjectivesThis study aimed to estimate the responsiveness to change of a generic [the 36-item Short Form Health Survey (SF-36)] and a specific health-related quality of life questionnaire [the Lupus Quality if Life questionnaire (LupusQoL)] according to SLE patients' self-reported changes in health status.MethodsIn a cohort of 185 SLE patients, quality of life (QoL) was measured three times at 3 month intervals by the LupusQoL and SF-36 questionnaires. Anchors for responsiveness were defined by patients' global assessment of disease impact according to changes in a visual analogue scale (VAS), a 7-point Likert scale and a 0-3 scale of five patient-reported symptoms. Mean change and s.d. in worsening and improving patients according to anchors were estimated using mixed models for repeated measures. Standardized response means (SRMs) were calculated in each group.ResultsPatients [mean age 39.6 years (s.d. 10.5), mean Safety of Estrogen in Lupus Erythematosus National Assessment-SLEDAI score 2.6 (s.d. 3.5)] answered a total of 515 questionnaires. For the VAS and Likert global anchors, worsening patients showed a significant decrease in all LupusQoL domains except for burden to others, body image and fatigue and all SF-36 domains with low to moderate responsiveness. Improving patients had a significant increase in all LupusQoL domains except for intimate relationship and all SF-36 domains except for physical functioning and global health with low to moderate responsiveness. Regarding similar domains in the SF-36 and LupusQoL, SRMs were higher in LupusQoL domains in improving patients, while SF-36 domains had larger SRMs in worsening patients.ConclusionBoth the SF-36 and LupusQoL were responsive to changes in QoL in SLE patients over a 3 month interval. LupusQoL seems to be more appropriate to measure improvements in QoL.© The Author 2014. Published by Oxford University Press on behalf of the British Society for Rheumatology. All rights reserved. For Permissions, please email: journals.permissions@oup.com.

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