Changes in quality of life in the first 5 years of disease in a multicentre cohort of patients with systemic lupus erythematosus (SLE)

Purpose: The Medical Outcome Survey Short Form 36 (SF-36) is recommended to assess quality of life (QoL) in SLE. The aim of the current study was to assess QoL over time in the first 5 years of a multi-centered inception cohort of patients with SLE.. Methods: An inception SLE cohort has been assembled according to a standardized protocol between 2000 and 2012. In addition to clinical and laboratory assessments, patients completed the SF-36 at yearly intervals. Only patients who had at least 5 completed QoL questionnaires were included in these analyses. GEE models were run separately for each of the 8 subscales and for the physical and mental component summary scores (PCS and MCS), adjusting for repeated measures by patients. Results: 495 patients were included. The mean (± SD) disease duration at first visit was 5.3± 4.1 months. The mean age at enrolment was 35.8 ± 13.2 years. All 8 subscales and 2 summary scores showed improvement in the first 2 years from enrolment. Between years 2 and 5 none of the subscales or summary scores showed any change. Minimal clinically important improvement was achieved by 35-55% of the patients and was influenced by demographic and disease factors. Conclusion: Unlike late stage lupus where QoL is stable over time, in patients with early disease all subscales improve in early follow-up up to 2 years. Therefore the SF-36 may be a sensitive outcome measure in early disease in patients with SLE. © 2014 American College of Rheumatology.