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Italian translation, cultural adaptation, and pilot testing of a questionnaire to assess family burden in inherited ichthyoses.

Maya El HachemDamiano AbeniAndrea DiociaiutiRoberta RotunnoFrancesco GesualdoGiovanna ZambrunoChristine Bodemer
Published in: Italian journal of pediatrics (2019)
The Italian version of the FBI generated in the present study is a useful instrument to measure the impact of ichthyosis on family daily life, education and working activities, psychological implications, and the disease economic load. The questionnaire will be further validated through a multicenter Italian study on burden of ARCI. A validated Italian questionnaire is a valuable tool for future clinical trials. In addition, it can be used to rapidly identify family distressing situations, which require attention and prompt intervention.
Keyphrases
  • psychometric properties
  • clinical trial
  • cross sectional
  • randomized controlled trial
  • healthcare
  • risk factors
  • study protocol
  • patient reported
  • current status
  • patient reported outcomes