Objectives To determine the frequency, accrual, attribution and outcome of neuropsychiatric (NP) events and impact on quality of life over 3 years in a large inception cohort of patients with systemic lupus erythematosus (SLE).
Methods The study was conducted by the Systemic Lupus International Collaborating Clinics. Patients were enrolled within 15 months of SLE diagnosis. NP events were identified using the American College of Rheumatology case definitions, and decision rules were derived to determine the proportion of NP disease attributable to SLE. The outcome of NP events was recorded and patient-perceived impact determined by the SF-36.
Results 1206 patients (89.6% female) with a mean (±SD) age of 34.5±13.2 years were included in the study. The mean disease duration at enrolment was 5.4±4.2 months. Over a mean follow-up of 1.9±1.2 years, 486/1206 (40.3%) patients had ≥1 NP events, which were attributed to SLE in 13.0–23.6% of patients using two a priori decision rules. The frequency of individual NP events varied from 47.1% (headache) to 0% (myasthenia gravis). The outcome was significantly better for those NP events attributed to SLE, especially if they occurred within 1.5 years of the diagnosis of SLE. Patients with NP events, regardless of attribution, had significantly lower summary scores for both mental and physical health over the study.
Conclusions NP events in patients with SLE are of variable frequency, most commonly present early in the disease course and adversely impact patients' quality of life over time. Events attributed to non-SLE causes are more common than those due to SLE, although the latter have a more favourable outcome.
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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); LS (MRC (UK) grant U.1052.00.009); 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 santé 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); 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); RR-G (National Institutes of Health research grants M01-RR00048; K24 AR02318; P60 AR 48098); ON (Swedish Medical Research council grant 13489); GS (Swedish Medical Research council grant 13489); VF (MRC(UK) grant U.1052.00.009).
Competing interests None.
Ethics approval This study was conducted with the approval of the Capital Health Research Ethics Board, Halifax, Nova Scotia, Canada and by the institutional research ethics boards of participating centres in accordance with the Declaration of Helsinki's guidelines for research in humans.
Provenance and peer review Not commissioned; externally peer reviewed.
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