Burden of inherited ichthyosis: a French national survey.

نویسندگان

  • Isabelle Dreyfus
  • Céline Pauwels
  • Emmanuelle Bourrat
  • Anne-Claire Bursztejn
  • Annabel Maruani
  • Christine Chiaverini
  • Aude Maza
  • Stéphanie Mallet
  • Didier Bessis
  • Sébastien Barbarot
  • Khaled Ezzedine
  • Pierre Vabres
  • Juliette Mazereeuw-Hautier
چکیده

Moderate to severe ichthyosis is known to have a significant impact on quality of life. A French national survey was performed to describe in more detail how ichthyosis impacts the patients' lives. A questionnaire specifically dedicated to ichthyosis was distributed to patients followed in hospital expert centres or members of the French association of patients. A total of 241 questionnaires were completed and returned (response ratio: 29% for children and 71% for adults). A negative impact of ichthyosis was obvious in terms of domestic life (skin care, housework, clothing, etc.), educational/professional lives (rejections by other children, workplace discrimination, absenteeism, etc) and for leisures/sports activities. The patient's economical resources were also heavily impacted by ichthyosis with important out-of-pocket expenses.

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عنوان ژورنال:
  • Acta dermato-venereologica

دوره 95 3  شماره 

صفحات  -

تاریخ انتشار 2015