Epidermolysis bullosa‐specific module of the Infants and Toddlers Dermatology Quality of Life (InToDermQoL) questionnaire

Abstract

Background Epidermolysis bullosa (EB) may have severe impact on different aspects of patients’ life. Until now there was no EB‐specific quality of life (QoL) instrument for young children. Objective To create EB‐specific proxy module of the Infants and Toddlers Dermatology Quality of Life (InToDermQoL) questionnaire. Methods Focus groups with parents of children with EB were organized. Parents of EB children were interviewed by the project staff with regard to their perception of QoL issues of the skin disease of their children. Results Focus groups with parents of EB children in Ukraine and Romania were organized. Parents represented eight boys and 12 girls from 3 months to 4 years old with different EB types and disease severity. Based on the analysis of focus groups’ results, two EB specific items that were not mentioned by parents of children with other skin diseases and therefore were not included to the dermatology‐specific InToDermQoL questionnaire were developed: ‘problems with defecation’ and ‘problems with shoes’. These problems were mentioned by 55% of all parents and 11.76% of parents that represented EB children older than 1 year, respectively. Conclusion We want to invite other centres and EB related organizations to join our project starting from the pilot test. There are many different reasons why QoL measurement is important in dermatology clinical practice and our goal is practical use of the instrument in children with EB.

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

“…The recall period of the InToDermQoL-EB module is 1 week. 5 To evaluate the validity of the questionnaire, parents or other adult relatives of children with EB aged from birth to 4 years were asked to fill in the questionnaires in Spain, Bulgaria, Croatia, Greece, Romania, Serbia and Ukraine. Median total scores and interquartile range were calculated for each version overall and according to sex and severity.…”

“…The maximum total score for children <1 year of age is 33, for 1‐ to 2‐year‐old children is 42 and for 3‐ to 4‐year‐old children is 51. The recall period of the InToDermQoL‐EB module is 1 week 5 . To evaluate the validity of the questionnaire, parents or other adult relatives of children with EB aged from birth to 4 years were asked to fill in the questionnaires in Spain, Bulgaria, Croatia, Greece, Romania, Serbia and Ukraine.…”

“…The EB‐specific module of the InToDermQoL questionnaire was recently developed to measure the impact of disease‐specific aspects in children from birth to the age of 4 years 5 . International pilot tests confirmed that there was no need to modify the instrument's items.…”

Validation of the dermatology‐specific proxy instrument the Infants and Toddlers Dermatology Quality of Life

“…There are 10 national language versions of the InToDermQoL . The epidermolysis bullosa‐specific module of the InToDermQoL questionnaire was recently developed …”

International pilot tests of the epidermolysis bullosa‐specific module of the Infants and Toddlers Dermatology Quality of Life questionnaire

“…This result is different from focus groups' results where parents of children with EB simplex did not mention this item. 3 From standard items of the InToDermQoL, the most relevant item was on child's pain (mentioned by 87.1% of parents) and most irrelevant was an item on rejection by other children (mentioned by 46.15% of parents). It was shown by the literature and our previous study that children may be influenced by teasing, bullying and avoiding by their peers from the age of 3 years old.…”