Burden of Inherited Ichthyosis: A French National Survey

Authors

  • 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

DOI:

https://doi.org/10.2340/00015555-1955

Keywords:

ichthyosis, quality of life, financial burden.

Abstract

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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Published

2014-09-17

How to Cite

Dreyfus, I., Pauwels, C., Bourrat, E., Bursztejn, A.-C., Maruani, A., Chiaverini, C., … Mazereeuw-Hautier, J. (2014). Burden of Inherited Ichthyosis: A French National Survey. Acta Dermato-Venereologica, 95(3), 326–328. https://doi.org/10.2340/00015555-1955

Issue

Vol. 95 No. 3 (2015)

Section

Articles

License

Copyright (c) 2014 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

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This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License.

All digitalized ActaDV contents is available freely online. The Society for Publication of Acta Dermato-Venereologica owns the copyright for all material published until volume 88 (2008) and as from volume 89 (2009) the journal has been published fully Open Access, meaning the authors retain copyright to their work.

Unless otherwise specified, all Open Access articles are published under CC-BY-NC licences, allowing third parties to copy and redistribute the material in any medium or format and to remix, transform, and build upon the material for non-commercial purposes, provided proper attribution to the original work.

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