Family burden in inherited ichthyosis: creation of a specific questionnaire - Dufresne, Hélène; Hadj-Rabia, Smail; Méni, Cécile; Sibaud, Vincent; Bodemer, Christine; Taïeb, Charles (Orphanet journal of rare diseases, 2013)
Keywords: Care and treatment; Chronic illnesses; Cost of Illness; Diagnosis; Disease; Family life; Female; Genetic aspects; Genetics; Health aspects; Health Status Indicators; Human Genetics; Humans; Ichthyosis; Ichthyosis, Lamellar - economics; Ichthyosis, Lamellar - physiopathology; Ichthyosis, Lamellar - psychology; Life Sciences; Male; Medical research; Medicine; Medicine & Public Health; Parents & parenting; Pharmacology/Toxicology; Population; Psychometrics; Quality of Life; Questionnaires; Rare diseases; Reproducibility of Results; Risk factors; Social integration; Social workers; Surveys; Surveys and Questionnaires; Burden questionnaire; Global burden disease; Quality of life; Ichthyosis