Burden of inherited ichthyosis: a French national survey

Acta Derm Venereol. 2015 Mar;95(3):326-8. doi: 10.2340/00015555-1955.

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.

MeSH terms

  • Absenteeism
  • Activities of Daily Living
  • Adolescent
  • Adult
  • Aged
  • Aged, 80 and over
  • Child
  • Child, Preschool
  • Cost of Illness*
  • Employment
  • Female
  • France / epidemiology
  • Genetic Predisposition to Disease
  • Health Care Costs
  • Health Expenditures
  • Health Surveys
  • Heredity
  • Humans
  • Ichthyosis / diagnosis
  • Ichthyosis / economics
  • Ichthyosis / epidemiology
  • Ichthyosis / genetics
  • Ichthyosis / psychology*
  • Infant
  • Leisure Activities
  • Male
  • Middle Aged
  • Phenotype
  • Quality of Life*
  • Rejection, Psychology
  • Severity of Illness Index
  • Sick Leave
  • Social Discrimination
  • Surveys and Questionnaires
  • Young Adult