title: Development of a Quality-of-Life Measure for Hidradenitis Suppurativa.
abstract: BACKGROUND
  Hidradenitis suppurativa (HS) is a chronic skin disorder with adverse impacts on both physical and psychosocial well-being. There is presently no validated HS-specific quality-of-life (QoL) measure.
  
  
  OBJECTIVE
  The objective of this study is to develop a QoL instrument for HS (HS-QoL) in accordance with recommended standards.
  
  
  METHODS
  Patient interviews (concept elicitation) and expert input were used to develop the conceptual framework for outcomes perceived important to patients with HS. A HS-QoL-v1 measure was developed, and cognitive interviews with patients were conducted for pilot testing.
  
  
  RESULTS
  Concept elicitation interviews with patients with HS (n = 21) generated 12 themes. Most frequently reported were impacts on daily activities and symptoms due to HS. These themes, along with literature review and input from clinical experts, informed development of the HS-QoL-v1. Nine cognitive interviews were conducted in a pilot test and resulted in the HS-QoL-v2 measure.
  
  
  CONCLUSIONS
  The HS-QoL-v2 is a preliminary QoL instrument for which further psychometric validation and establishment of clinimetric properties will be undertaken.
authors.affiliation: 1 Department of Psychology, University of Windsor, Windsor, Ontario, Canada.
authors.forename: Mia
authors.initials: M
authors.lastname: Sisic
authors.affiliation: 2 Penn State Hershey Dermatology, Hershey, PA, USA.
authors.forename: Joslyn S
authors.initials: JS
authors.lastname: Kirby
authors.affiliation: 3 Windsor Clinical Research, Inc, Windsor, Ontario, Canada.
authors.forename: Sanwarjit
authors.initials: S
authors.lastname: Boyal
authors.affiliation: 1 Department of Psychology, University of Windsor, Windsor, Ontario, Canada.
authors.forename: Lisa
authors.initials: L
authors.lastname: Plant
authors.affiliation: 1 Department of Psychology, University of Windsor, Windsor, Ontario, Canada.
authors.forename: Chelsea
authors.initials: C
authors.lastname: McLellan
authors.affiliation: 3 Windsor Clinical Research, Inc, Windsor, Ontario, Canada.|4 Department of Medicine, University of Western Ontario, London, Ontario, Canada.
authors.forename: Jerry
authors.initials: J
authors.lastname: Tan
mesh_terms: D000328:Adult; D000368:Aged; D005260:Female; D017497:Hidradenitis Suppurativa / Q000150:complications* / Q000523:psychology*; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D010865:Pilot Projects; D011788:Quality of Life; D012196:Review Literature as Topic; D011795:Surveys and Questionnaires; D055815:Young Adult
keywords: HS-QoL; development; hidradenitis suppurativa (HS); impacts; measure; patient-reported outcomes (PRO); quality of life (QoL)