title: Benefit evaluation in vitiligo treatment: development and validation of a patient-defined outcome questionnaire.
abstract: BACKGROUND
  In addition to clinical efficacy, patient-defined benefit assessment has become an important outcome parameter. Thus far, no such instrument has been developed for vitiligo.
  
  
  OBJECTIVE
  Development and validation of a patient-defined benefit questionnaire in the therapy of vitiligo.
  
  
  METHODS
  Open questioning of 50 vitiligo patients generated 110 benefit items, which were converted into a 26-item questionnaire by a panel of dermatologists, psychologists and patients. This was used to record patient-defined needs prior to therapy and to evaluate patient benefit attained after therapy. A 'patient benefit index' (PBI) was formed on the basis of both. Validation was based on data of n = 1,023 vitiligo patients.
  
  
  RESULTS
  The questionnaires were feasible in clinical practice, Cronbach's alpha (patient need questionnaire) was 0.94. The PBI showed convergent and discriminant validity with respect to quality of life and patient satisfaction.
  
  
  CONCLUSIONS
  The PBI for vitiligo is a valid instrument, which is highly accepted in practice for recording patient-reported benefit.
authors.affiliation: Competenzzentrum Versorgungsforschung in der Dermatologie, FG Gesundheitsökonomie und Lebensqualitätsforschung, Universitätsklinikum Hamburg-Eppendorf, Hamburg, Deutschland. m.augustin@derma.de
authors.forename: M
authors.initials: M
authors.lastname: Augustin
authors.forename: A I
authors.initials: AI
authors.lastname: Gajur
authors.forename: C
authors.initials: C
authors.lastname: Reich
authors.forename: S J
authors.initials: SJ
authors.lastname: Rustenbach
authors.forename: I
authors.initials: I
authors.lastname: Schaefer
mesh_terms: D005069:Evaluation Studies as Topic; D005240:Feasibility Studies; D005260:Female; D006801:Humans; D008297:Male; D011701:PUVA Therapy; D010358:Patient Participation; D011594:Psychometrics / Q000706:statistics & numerical data; D011788:Quality of Life; D015203:Reproducibility of Results; D012680:Sensitivity and Specificity; D012720:Severity of Illness Index; D018434:Sickness Impact Profile; D011795:Surveys and Questionnaires; D014820:Vitiligo / Q000175:diagnosis / Q000188:drug therapy* / Q000523:psychology