Initial validation of the epidermolysis bullosa-specific module of the Infants and Toddlers Dermatology Quality of Life (InToDermQoL) questionnaire.

Children with epidermolysis bullosa (EB) experienced the highest quality of life impact among several skin conditions and have problems which had not been reported by parents of children with other skin diseases. The EB-specific module of the Infants and Toddlers Dermatology Quality of Life (InToDermQoL) questionnaire was recently developed to measure the impact of disease-specific aspects in children from birth to the age of four years. The aim of this study was initial validation of the InToDermQoL-EB questionnaire. Parents of 44 children with EB from seven countries completed the InToDermQoL-EB questionnaire. Cronbach's alpha was 0.86, 0.89 and 0.91 for three age-specific versions. Differences between severity levels were all significant except for that between moderate and severe level in the version for 3-4 years old children. All items of the three versions of the InToDermQoL-EB showed very high levels of relevance except "problems with defecation" in children under one year of age and "rejection by other children" in 3-4 years old children. The three versions of the InToDermQoL-EB instrument showed good internal consistency and discriminated well between different severity levels. All InToDermQoL-EB items were confirmed as being of high relevance and the questionnaire may be used in practice and clinical trials. This article is protected by copyright. All rights reserved.