Burden of Inherited Ichthyosis: A French National Survey
Résumé
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.
Mots clés
Psychology
Severity of Illness Index
Sick Leave
Social Discrimination
Surveys and Questionnaires
Young Adult
Absenteeism
Activities of Daily Living
Adolescent
Adult
Aged
80 and over
Child
Preschool
Cost of Illness
Employment
Female
France
Genetic Predisposition to Disease
Health Care Costs
Health Expenditures
Health Surveys
Heredity
Humans
Ichthyosis
Infant
Leisure Activities
Male
Middle Aged
Phenotype
Quality of Life
Rejection