Burden of Inherited Ichthyosis: A French National Survey
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
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.