title: Changes in referral, treatment and outcomes in patients with systemic lupus erythematosus in Germany in the 1990s and the 2000s.
abstract: OBJECTIVE
  To evaluate trends in the referral, treatment and outcome of patients with systemic lupus erythematosus (SLE) in Germany over two decades.
  
  
  METHODS
  From 1993 to 2012, ∼1200 patients with SLE were recorded annually in the national database of the German Collaborative Arthritis Centres. Treatment patterns, healthcare use and outcomes, such as disease activity, function and work participation, were evaluated over time. Furthermore, two distinct cohorts of patients (enrolment 1994-1998, n=467; and 2004-2008, n=376) observed over 5 years were assessed for changes in outcomes.
  
  
  RESULTS
  The mean disease duration at the first visit to a rheumatologist decreased from 2.6 (1994) to 1.5 (2012) years. Glucocorticoids (69%), antimalarials (56%), azathioprine (22%), non-steroidal anti-inflammatory drugs (23%) and mycophenolate mofetil (15%) were the most frequently used treatments in 2012. A significant increase was observed in the use of antimalarials and mycophenolate mofetil. The use of glucocorticoids at >7.5 mg/day decreased from 27% (1994) to 10% (2012). The average length of sick leave taken due to SLE declined from 9 weeks (1997) to 6 weeks (2012). When comparing the two longitudinal cohorts, in the cohort from the 2000s, the intraindividual decline of disease activity was significantly stronger (p<0.001), and fewer patients retired early (36% vs 46%).
  
  
  CONCLUSIONS
  The disease activity and resource use declined considerably over the observation period, and more patients remained in the labour force. Earlier treatment onset, faster modification of the treatment regimen and more intensive use of anti-inflammatory therapy may account for the improved outcomes in patients with SLE across the years.
authors.affiliation: Epidemiology Unit , German Rheumatism Research Centre, A Leibniz Institute, Berlin , Germany.
authors.forename: Katinka
authors.initials: K
authors.lastname: Albrecht
authors.affiliation: Epidemiology Unit , German Rheumatism Research Centre, A Leibniz Institute, Berlin , Germany ; Department of Rheumatology and Clinical Immunology , Charité University Hospital , Berlin , Germany.
authors.forename: Dörte
authors.initials: D
authors.lastname: Huscher
authors.affiliation: Department of Rheumatology , Heinrich-Heine-University Duesseldorf , Duesseldorf , Germany.
authors.forename: Jutta
authors.initials: J
authors.lastname: Richter
authors.affiliation: Department of Rheumatology and Clinical Immunology , Charité University Hospital , Berlin , Germany.
authors.forename: Marina
authors.initials: M
authors.lastname: Backhaus
authors.affiliation: Epidemiology Unit , German Rheumatism Research Centre, A Leibniz Institute, Berlin , Germany.
authors.forename: Sascha
authors.initials: S
authors.lastname: Bischoff
authors.affiliation: Department of Rheumatology , Robert-Bosch Hospital , Stuttgart , Germany.
authors.forename: Ina
authors.initials: I
authors.lastname: Kötter
authors.affiliation: Epidemiology Unit , German Rheumatism Research Centre, A Leibniz Institute, Berlin , Germany.
authors.forename: Katja
authors.initials: K
authors.lastname: Thiele
authors.affiliation: Epidemiology Unit , German Rheumatism Research Centre, A Leibniz Institute, Berlin , Germany ; Department of Rheumatology and Clinical Immunology , Charité University Hospital , Berlin , Germany.
authors.forename: Angela
authors.initials: A
authors.lastname: Zink
keywords: Outcomes research; Systemic Lupus Erythematosus; Treatment