title: Treatment Satisfaction in Systemic Lupus Erythematosus: Development of a Patient-Reported Outcome Measure.
abstract: OBJECTIVE
  The aim of this study was to develop a patient-reported outcome measure specific for systemic lupus erythematosus (SLE) to assess patient satisfaction with treatment, treatment options, and medical care.
  
  
  METHODS
  Patients with SLE were recruited from four US rheumatology practices. Concept elicitation interviews identified aspects that patients considered important and relevant regarding satisfaction with treatment and medical care. Concept elicitation interviews and clinical input were used to draft the Lupus Satisfaction Questionnaire (LSQ). A second cohort of patients with SLE participated in combined concept elicitation/cognitive debriefing interviews, after which the LSQ was revised.
  
  
  RESULTS
  Fourteen patients completed concept elicitation interviews: 93% were female, 57% were white, and 85% had moderate/severe SLE. Current treatments included hydroxychloroquine (93%), steroids (79%), and belimumab (57%), and 43% were biologic naive. Patients were generally satisfied with their treatment and medical care; however, they were dissatisfied with treatment adverse effects and the number of available treatment options. Cognitive debriefing interviews (n = 8) demonstrated that the LSQ was comprehensive, clear, and relevant; therefore, only minor revisions were made to the questionnaire. The LSQ assesses satisfaction with current SLE treatments (25 items), medical care (11 items), and insurance coverage (3 items). The draft LSQ was evaluated in 195 adults with SLE. Fifty-eight percent of patients reported that they were "somewhat satisfied" with their SLE treatment.
  
  
  CONCLUSIONS
  The LSQ has been developed to assess treatment satisfaction among patients with SLE. Following further testing to support its validity and reliability, it will provide a useful tool to facilitate assessment of satisfaction with treatments for SLE and help inform treatment decisions.
authors.affiliation: From the *Health Outcomes Solutions, Winter Park, FL; †GlaxoSmithKline, Philadelphia, PA; ‡GlaxoSmithKline, London, UK; and §Columbia University Medical Center, New York, NY.
authors.forename: Susan D
authors.initials: SD
authors.lastname: Mathias
authors.forename: Pamela
authors.initials: P
authors.lastname: Berry
authors.forename: Katie
authors.initials: K
authors.lastname: Pascoe
authors.forename: Jane
authors.initials: J
authors.lastname: de Vries
authors.forename: Anca D
authors.initials: AD
authors.lastname: Askanase
authors.forename: Hilary H
authors.initials: HH
authors.lastname: Colwell
authors.forename: David J
authors.initials: DJ
authors.lastname: Chang
mesh_terms: D000328:Adult; D061067:Antibodies, Monoclonal, Humanized / Q000627:therapeutic use*; D018501:Antirheumatic Agents / Q000627:therapeutic use; D005260:Female; D005938:Glucocorticoids / Q000627:therapeutic use*; D006801:Humans; D006886:Hydroxychloroquine / Q000627:therapeutic use*; D019458:Insurance Coverage / Q000706:statistics & numerical data; D008180:Lupus Erythematosus, Systemic / Q000191:economics / Q000453:epidemiology / Q000523:psychology / Q000628:therapy; D008297:Male; D010346:Patient Care Management / Q000379:methods / Q000592:standards; D057240:Patient Preference / Q000706:statistics & numerical data*; D000071066:Patient Reported Outcome Measures; D011788:Quality of Life; D015203:Reproducibility of Results; D011795:Surveys and Questionnaires; D014481:United States / Q000453:epidemiology
chemical_list: D061067:Antibodies, Monoclonal, Humanized; D018501:Antirheumatic Agents; D005938:Glucocorticoids; D006886:Hydroxychloroquine; C511911:belimumab