title: Lupus-specific health outcome measure for US patients: the LupusQoL-US version.
abstract: BACKGROUND
  Patient-reported outcomes are valuable for the management of chronic diseases like systematic lupus erythematosus (SLE), but no measures have been validated for use in US-based patients with SLE.
  
  
  OBJECTIVE
  To adapt and assess the validity and reliability of an SLE-specific quality of life (QoL) measure developed in the United Kingdom, the LupusQoL, for use in US-based patients with SLE.
  
  
  METHODS
  Debriefing interviews of subjects with SLE guided the language modifications of the tool. The LupusQoL-US, SF-36 and EQ5D were administered. Internal consistency (ICR) and test-retest (TRT) reliability, convergent and discriminative validity were examined. Factor analyses were performed.
  
  
  RESULTS
  The mean (SD) age of the 185 subjects with SLE was 42.5 (12.9) years. ICR and TRT of the eight domains ranged from 0.85 to 0.94 and 0.68 to 0.92, respectively. Related domains on the SF-36 correlated with the LupusQoL domains (physical health and physical function r = 0.73, physical health and role physical r = 0.57, emotional health and mental health r = 0.72, emotional health and role emotional r = 0.48, pain and bodily pain r = 0.66, fatigue and vitality r = 0.70, planning and social functioning r = 0.58). Most LupusQoL-US domains could discriminate between subjects with varied disease activity and damage. Principal component analysis disclosed five factors in the US version, with physical function, pain and planning items loading on one factor.
  
  
  CONCLUSIONS
  These data provide evidence to support the psychometric properties of the LupusQoL-US, suggesting its utility as an assessment tool for patients with SLE in the USA.
authors.affiliation: Section of Rheumatology, Department of Medicine, Rush University Medical Center, Chicago, Illinois 60612, USA. Meenakshi_Jolly@rush.edu
authors.forename: M
authors.initials: M
authors.lastname: Jolly
authors.forename: A S
authors.initials: AS
authors.lastname: Pickard
authors.forename: C
authors.initials: C
authors.lastname: Wilke
authors.forename: R A
authors.initials: RA
authors.lastname: Mikolaitis
authors.forename: L-S
authors.initials: LS
authors.lastname: Teh
authors.forename: K
authors.initials: K
authors.lastname: McElhone
authors.forename: L
authors.initials: L
authors.lastname: Fogg
authors.forename: J
authors.initials: J
authors.lastname: Block
mesh_terms: D000328:Adult; D003431:Cross-Cultural Comparison; D005260:Female; D006305:Health Status Indicators; D006801:Humans; D007802:Language; D008180:Lupus Erythematosus, Systemic / Q000503:physiopathology / Q000523:psychology / Q000534:rehabilitation*; D008297:Male; D008875:Middle Aged; D017063:Outcome Assessment, Health Care / Q000379:methods; D011594:Psychometrics; D011788:Quality of Life; D015203:Reproducibility of Results; D006113:United Kingdom; D014481:United States