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Initial validation of the epidermolysis bullosa‐specific module of the Infants and Toddlers Dermatology Quality of Life questionnaire
Author(s) -
Chernyshov Pavel V.,
Marron Servando E.,
TomasAragones Lucia,
Pustišek Nives,
Gedeon Inna,
Suru Alina,
Tiplica George S.,
Salavastru Carmen M.,
Nikolić Miloš,
Kakourou Talia,
Valari Manthoula,
Yordanova Ivelina,
Darlenski Razvigor,
Sampogna Francesca
Publication year - 2020
Publication title -
dermatologic therapy
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.595
H-Index - 68
eISSN - 1529-8019
pISSN - 1396-0296
DOI - 10.1111/dth.14128
Subject(s) - medicine , epidermolysis bullosa , quality of life (healthcare) , cronbach's alpha , pediatrics , internal consistency , dermatology , family medicine , psychometrics , clinical psychology , nursing
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 3‐ to 4‐year‐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.