Family burden in inherited ichthyosis: creation of a specific questionnaire
نویسندگان
چکیده
منابع مشابه
Family burden in inherited ichthyosis: creation of a specific questionnaire
BACKGROUND The concept of individual burden, associated with disease, has been introduced recently to determine the "disability" caused by the pathology in the broadest sense of the word (psychological, social, economic, physical). Inherited ichthyosis belong to a large heterogeneous group of Mendelian Disorders of Cornification. Skin symptoms have a major impact on patients' Quality of Life bu...
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To develop and validate a specific questionnaire to assess burden on families of children with infantile haemangioma (IH): the Haemangioma Family Burden questionnaire (HFB). Items were generated from a literature review and a verbatim report from parents. Subsequently, a study was implemented at the Necker Hospital and the Pellegrin Children's Hospital for psychometric analysis. The HFB was ref...
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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 we...
متن کاملAtopic dermatitis burden scale: creation of a specific burden questionnaire for families.
BACKGROUND The notion of individual burden, associated with a disease, has been introduced to determine the 'disability' in the broadest sense (psychological, social, economic and physical). Atopic dermatitis (AD) is one of the most common chronic inflammatory skin diseases with an estimated prevalence of 5%-30% in children. OBJECTIVE To develop and validate a specific questionnaire which ass...
متن کاملInflectional morphology in a family with inherited specific language impairment
The production of regular and irregular past tense forms was investigated among the members of an English-speaking family with a hereditary disorder of language. Unlike the control subjects, the family members affected by the disorder failed to generate overregularizations (e.g., digged) or novel regular forms (plammed, crived), whereas they did produce novel irregularizations (crive– crove). T...
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ژورنال
عنوان ژورنال: Orphanet Journal of Rare Diseases
سال: 2013
ISSN: 1750-1172
DOI: 10.1186/1750-1172-8-28