Initial validation of the epidermolysis bullosa‐specific module of the Infants and Toddlers Dermatology Quality of Life questionnaire

Abstract

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 4 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 .86, .89 and .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-to 4-year-old children. All items of the three versions of the InToDermQoL-EB showed very high levels of relevance except "problems with defecation" in children younger than 1 year and "rejection by other children" in 3to 4-year-old children. The three versions of the InToDermQoL-EB instrument showed good internal consistency and discriminated well between different

Quality of Life in Hidradenitis Suppurativa: An Update

“…Large international comparative studies are needed to confirm that existing instruments may be used validly in different cultural and geographical contexts. Rather than developing instruments in one country and then adapting and validating such instruments in different cultural settings, another option is to create novel QoL instruments from the start in an international context, with development being shared across different countries or cultures, as occurred in the development of the InToDermQoL [ 88 , 89 ] and its epidermolysis bullosa-specific module [ 90 , 91 ]. In line with this concept, the HS-specific HRQoL instrument HiSQOL was developed simultaneously in Denmark and the USA [ 32 ].…”

Sensitivity to treatment and score bands of the Infants and Toddlers Dermatology Quality of Life questionnaire

“… 3 An epidermolysis bullosa-specific module of the InToDermQoL was developed and underwent initial validation separately. 4 , 5 , 6 …”

Cuidados de enfermagem com crianças e adolescentes com epidermólise bolhosa: revisão sistemática

“…A epiderme se rompe por conta do aumento da temperatura espontânea, causando bo-lhas que podem variar de leve a grave, conforme o subtipo de epidermólise bolhosa. (5) A pele saudável contém uma camada de proteínas, denominada colágeno, capaz de mantê-la íntegra e a qual é responsável pela união das células da camada mais superficial da pele com a camada mais interna, proporcionando resistência e tendo uma função protetora. Nas pessoas diagnosticadas com epidermólise bolhosa, esse colágeno é ausente ou está alterado, ocasionando ruptura e formação de bolhas na pele.…”

“…Nas pessoas diagnosticadas com epidermólise bolhosa, esse colágeno é ausente ou está alterado, ocasionando ruptura e formação de bolhas na pele. (1,5,6) Destarte, a principal característica de epidermólise bolhosa é o surgimento de lesões crônicas na pele que, em geral, são pequenas, numerosas, dolorosas, desconfortáveis e com exsudato. Os subtipos de naturezas mais graves da epidermólise bolhosa provocam sofrimento físico e emocional à criança e ao adolescente.…”