The substantial burden of systemic lupus erythematosus on the productivity and careers of patients: a European patient-driven online survey

Caroline Gordon, David Isenberg, Kirsten Lerstrøm, Yvonne Norton, Enkeleida Nikaï, Daphnee S Pushparajah, Matthias Schneider

Research output: Contribution to journalArticlepeer-review

57 Citations (Scopus)

Abstract

Objective. The objective of this study was to explore the burden of SLE and its effect on patients' lives.Methods. The Lupus European Online (LEO) survey included patient-designed questions on demographics, SLE diagnosis, and the impact of SLE on careers. Three SLE-specific patient-reported outcome (PRO) questionnaires were also completed: the Lupus Quality of Life (LupusQoL), the Fatigue Severity Scale (FSS), and the Work Productivity and Activity Impairment (WPAI)-Lupus v2.0. The survey was available online in five languages from May through August 2010. All self-identified SLE participants were eligible to respond. Survey results were analysed using descriptive statistics. Multivariate linear regression explored factors contributing to impaired productivity.Results. Of the 2070 European SLE patients completing the survey, 93.1% were women, 86.7% were aged
Original languageEnglish
Pages (from-to)2292-2301
JournalRheumatology
Volume52
Issue number12
DOIs
Publication statusPublished - 18 Sep 2013

Keywords

  • lupus
  • SLE
  • HRQoL
  • fatigue
  • productivity
  • PRO

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