title: Burden of inherited ichthyosis: a French national survey.
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.
authors.affiliation: Reference Centre for Rare Skin Diseases, Dermatology Department, CHU Toulouse, Larrey Hospital, FR-31059 Toulouse, France. dreyfus.i@chu-toulouse.fr.
authors.forename: Isabelle
authors.initials: I
authors.lastname: Dreyfus
authors.forename: Céline
authors.initials: C
authors.lastname: Pauwels
authors.forename: Emmanuelle
authors.initials: E
authors.lastname: Bourrat
authors.forename: Anne-Claire
authors.initials: AC
authors.lastname: Bursztejn
authors.forename: Annabel
authors.initials: A
authors.lastname: Maruani
authors.forename: Christine
authors.initials: C
authors.lastname: Chiaverini
authors.forename: Aude
authors.initials: A
authors.lastname: Maza
authors.forename: Stéphanie
authors.initials: S
authors.lastname: Mallet
authors.forename: Didier
authors.initials: D
authors.lastname: Bessis
authors.forename: Sébastien
authors.initials: S
authors.lastname: Barbarot
authors.forename: Khaled
authors.initials: K
authors.lastname: Ezzedine
authors.forename: Pierre
authors.initials: P
authors.lastname: Vabres
authors.forename: Juliette
authors.initials: J
authors.lastname: Mazereeuw-Hautier
mesh_terms: D000041:Absenteeism; D000203:Activities of Daily Living; D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D002648:Child; D002675:Child, Preschool; D017281:Cost of Illness; D004651:Employment; D005260:Female; D005602:France / Q000453:epidemiology; D020022:Genetic Predisposition to Disease; D017048:Health Care Costs; D005102:Health Expenditures; D006306:Health Surveys; D040941:Heredity; D006801:Humans; D007057:Ichthyosis / Q000175:diagnosis / Q000191:economics / Q000453:epidemiology / Q000235:genetics / Q000523:psychology*; D007223:Infant; D007899:Leisure Activities; D008297:Male; D008875:Middle Aged; D010641:Phenotype; D011788:Quality of Life; D012059:Rejection, Psychology; D012720:Severity of Illness Index; D018582:Sick Leave; D063508:Social Discrimination; D011795:Surveys and Questionnaires; D055815:Young Adult