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 8 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 one 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.
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