title: IQoL-32: a new ichthyosis-specific measure of quality of life.
abstract: BACKGROUND
  Inherited ichthyoses are associated with impaired quality of life (QoL).
  
  
  OBJECTIVE
  The aim of this study was to create and validate a QoL questionnaire specifically dedicated to patients with ichthyosis.
  
  
  METHODS
  A prequestionnaire was drawn after selecting items from a verbatim transcript. It was then subjected to a cognitive debriefing. During the validation step, this questionnaire was sent to patients with the Dermatology Life Quality Index, Short Form-12 health-related questionnaire, and severity scores (global severity: mild/moderate/severe/very severe; clinical severity evaluated by 6 visual analog scales). A shortened version of the questionnaire was designed. The validity of the tool was confirmed: for its structure and 1-dimensional nature (Cronbach α), convergent (Spearman correlation) and discriminating (Tukey test) validity; α risk was fixed at 5%.
  
  
  RESULTS
  The initial questionnaire included 60 items. During the validation phase, 59 subjects were tested. The shortened version included 32 items (IQoL-32) and 7 dimensions (Cronbach α: 0.94). The higher the score, the more impacted the QoL. IQoL-32 was positively correlated to Dermatology Life Quality Index (P < .0001) and negatively to Short Form-12 health-related questionnaire (P < .0001). IQoL-32 was highly correlated to clinical severity: overall analysis (Spearman ranking: 0.72; P < .0001) or analysis per dimension (highest correlations: discomfort, pain, interpersonal relations). IQoL-32 demonstrated a higher correlation with visual analog scale compared with Dermatology Life Quality Index and Short Form-12 health-related questionnaire. It also showed a good discriminating power (P < .0001) according to overall severity levels.
  
  
  CONCLUSIONS
  Only patients residing in France were included.
  
  
  CONCLUSIONS
  IQoL-32 is a specific and validated questionnaire for inherited ichthyosis. It will be very useful for patient care and research.
authors.affiliation: Reference Center for Rare Skin Diseases, Dermatology Department, Larrey Hospital, Centre Hospitalo-Universitaire Toulouse, Paul Sabatier University, Toulouse, France. dreyfus.i@chu-toulouse.fr
authors.forename: Isabelle
authors.initials: I
authors.lastname: Dreyfus
authors.forename: Charles
authors.initials: C
authors.lastname: Taïeb
authors.forename: Sébastien
authors.initials: S
authors.lastname: Barbarot
authors.forename: Aude
authors.initials: A
authors.lastname: Maza
authors.forename: Isabelle
authors.initials: I
authors.lastname: Galera
authors.forename: Emmanuelle
authors.initials: E
authors.lastname: Bourrat
authors.forename: Christine
authors.initials: C
authors.lastname: Chiaverini
authors.forename: Khaled
authors.initials: K
authors.lastname: Ezzedine
authors.forename: Anne
authors.initials: A
authors.lastname: Le Rhun
authors.forename: Juliette
authors.initials: J
authors.lastname: Mazereeuw-Hautier
mesh_terms: D006305:Health Status Indicators; D006801:Humans; D007057:Ichthyosis; D011788:Quality of Life; D011795:Surveys and Questionnaires