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SF-36 summary and subscale scores are reliable outcomes of neuropsychiatric events in systemic lupus erythematosus
  1. J G Hanly1,
  2. M B Urowitz2,
  3. D Jackson3,
  4. S C Bae4,
  5. C Gordon5,
  6. D J Wallace6,
  7. A Clarke7,
  8. S Bernatsky8,
  9. A Vasudevan9,
  10. D Isenberg10,
  11. A Rahman10,
  12. J Sanchez-Guerrero11,
  13. J Romero-Diaz11,
  14. J T Merrill12,
  15. P R Fortin2,
  16. D D Gladman2,
  17. I N Bruce13,
  18. K Steinsson14,
  19. M Khamashta15,
  20. G S Alarcón16,
  21. B Fessler16,
  22. M Petri17,
  23. S Manzi18,
  24. O Nived19,
  25. G Sturfelt19,
  26. R Ramsey-Goldman20,
  27. M A Dooley21,
  28. C Aranow22,
  29. R Van Vollenhoven23,
  30. M Ramos-Casals24,25,
  31. A Zoma26,
  32. K Kalunian24,
  33. V Farewell3,
  34. for the Systemic Lupus International Collaborating Clinics (SLICC)
  1. 1Department of Medicine and Department of Pathology, Division of Rheumatology, Queen Elizabeth II Health Sciences Centre and Dalhousie University, Halifax, Nova Scotia, Canada
  2. 2Centre for Prognosis Studies in the Rheumatic Diseases, Toronto Western Hospital and University of Toronto, Ontario, Canada
  3. 3MRC Biostatistics Unit, Institute of Public Health, University Forvie Site, Cambridge, UK
  4. 4Department of Rheumatology, Hanyang University Hospital for Rheumatic Diseases, Seoul, Korea
  5. 5Rheumatology Research Group, School of Immunity and Infection, College of Medical and Dental Sciences, University of Birmingham, Birmingham, UK
  6. 6Cedars–Sinai/David Geffen School of Medicine at UCLA, Los Angeles, California, USA
  7. 7Divisions of Clinical Immunology/Allergy and Clinical Epidemiology, Montreal General Hospital, McGill University Health Centre, Montreal, Quebec, Canada
  8. 8Divisions of Rheumatology and Clinical Epidemiology, Montreal General Hospital, McGill University Health Centre, Montreal, Quebec, Canada
  9. 9Department of Medicine, SUNY Downstate Medical Center, Brooklyn, New York, USA
  10. 10Centre for Rheumatology Research, University College London, London, UK
  11. 11Instituto Nacional de Ciencias Medicas y Nutrición, Mexico City, Mexico
  12. 12Department of Clinical Pharmacology, Oklahoma Medical Research Foundation, Oklahoma City, Oklahoma, USA
  13. 13Arthritis Research UK Epidemiology Unit, School of Translational Medicine, Manchester Academic Health Sciences Centre, The University of Manchester, Manchester, UK
  14. 14Center for Rheumatology Research, Landspitali University Hospital, Reykjavik, Iceland
  15. 15Lupus Research Unit, The Rayne Institute, St Thomas' Hospital, King's College London School of Medicine, London, UK
  16. 16Department of Medicine, University of Alabama at Birmingham, Birmingham, Alabama, USA
  17. 17Department of Rheumatology, Johns Hopkins University, Baltimore, Maryland, USA
  18. 18Division of Rheumatology, University of Pittsburgh School of Medicine, Pittsburgh, Pennsylvania, USA
  19. 19Department of Rheumatology, University Hospital Lund, Lund, Sweden
  20. 20Northwestern University and Feinberg School of Medicine, Chicago, Illinois, USA
  21. 21University of North Carolina, Chapel Hill, North Carolina, USA
  22. 22Columbia University Medical Center, New York, USA
  23. 23Department of Rheumatology, Karolinska Institute, Stockholm, Sweden
  24. 24UCSD School of Medicine, La Jolla, California, USA
  25. 25Servicio Enfermedades Autoinmunes Hospital Clínico y Provincial, Barcelona, Spain
  26. 26Lanarkshire Centre for Rheumatology, Hairmyres Hospital, East Kilbride, Scotland, UK
  1. Correspondence to Dr J G Hanly, Division of Rheumatology, Nova Scotia Rehabilitation Centre (2nd Floor), 1341 Summer Street, Halifax, NS B3H 4K4, Canada; john.hanly{at}


Objective To examine change in health-related quality of life in association with clinical outcomes of neuropsychiatric events in systemic lupus erythematosus (SLE).

Methods An international study evaluated newly diagnosed SLE patients for neuropsychiatric events attributed to SLE and non-SLE causes. The outcome of events was determined by a physician-completed seven-point scale and compared with patient-completed Short Form 36 (SF-36) health survey questionnaires. Statistical analysis used linear mixed-effects regression models with patient-specific random effects.

Results 274 patients (92% female; 68% Caucasian), from a cohort of 1400, had one or more neuropsychiatric event in which the interval between assessments was 12.3±2 months. The overall difference in change between visits in mental component summary (MCS) scores of the SF-36 was significant (p<0.0001) following adjustments for gender, ethnicity, centre and previous score. A consistent improvement in neuropsychiatric status (N=295) was associated with an increase in the mean (SD) adjusted MCS score of 3.66 (0.89) in SF-36 scores. Between paired visits when the neuropsychiatric status consistently deteriorated (N=30), the adjusted MCS score decreased by 4.00 (1.96). For the physical component summary scores the corresponding changes were +1.73 (0.71) and −0.62 (1.58) (p<0.05), respectively. Changes in SF-36 subscales were in the same direction (p<0.05; with the exception of role physical). Sensitivity analyses confirmed these findings. Adjustment for age, education, medications, SLE disease activity, organ damage, disease duration, attribution and characteristics of neuropsychiatric events did not substantially alter the results.

Conclusion Changes in SF-36 summary and subscale scores, in particular those related to mental health, are strongly associated with the clinical outcome of neuropsychiatric events in SLE patients.

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  • Funding JGH (Canadian Institutes of Health Research grant MOP-57752, Capital Health Research Fund); MBU (Canadian Institutes of Health Research grant MOP-49529, Lupus Foundation of Ontario, Ontario Lupus Association, Lupus UK, Lupus Foundation of America, Lupus Alliance Western New York, Conn Smythe Foundation, Tolfo Family (Toronto)); DJ (MRC (UK) grant U.1052.00.006.00001.01); SCB (Korea Healthcare technology R&D project, Ministry for Health, Welfare and Family Affairs, Republic of Korea (A080588)); CG (Lupus UK, arthritis research campaign, Wellcome Trust Clinical Research Facility in Birmingham, UK); AC (Fonds de la recherche en sante de Quebec National Scholar, Singer Family Fund for Lupus Research); SB (Canadian Institutes of Health Research Junior Investigator Award; Fonds de la recherche en santé du Québéc Jeune Chercheure; Canadian Arthritis Network Scholar Award; McGill University Health Centre Research Institute); GSA (University of Alabama at Birmingham, grant P60AR48095); DDG (Canadian Institutes of Health Research); PRF (Distinguished Senior Research Investigator of the Arthritis Society and Arthritis Centre of Excellence); INB (supported by the Manchester Academic Health Sciences Centre and the Manchester NIHR Biomedical Research Centre); MP (Hopkins Lupus Cohort grant AR 43727, Johns Hopkins University General Clinical Research Center grant MO1 RR00052); SM (National Institutes of Health research grants R01 AR46588, K24 AR002213 and M01 RR000056; ON (Swedish Medical Research council grant 13489)); GS (Swedish Medical Research council grant 13489); RR-G (National Institutes of Health research grants UL1RR025741; K24 AR02318; P60 AR 48098); VF (MRC (UK) grant U.1052.00.009.00001.01).

  • Competing interests None.

  • Patient consent Obtained.

  • Ethics approval This study was conducted with the approval of the Capital Health Research Ethics Board and the research ethics boards at each of the participating centres.

  • Provenance and peer review Not commissioned; externally peer reviewed.