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Quality of life evaluation in epidermolysis bullosa: Development of a specific quality of life instrument

A valid and reliable specific quality of life (QoL) tool was developed for use in measuring the effect of disease impact and interventions in epidermolysis bullosa (EB). Open, nonstructured interviews were conducted on 26 EB patients, together with 33 family members and 11 health professionals. A pilot questionnaire was compiled and sent to 130 EB patients; 115 were returned and a factor analysis conducted which led to a 17-item final questionnaire, the QoLEB. The QoLEB is the first EB-specific QoL questionnaire, useful in EB subtypes and correlated highly with other QoL instruments, such as the Dermatology Life Quality Index (r = 0.75), the Stanford function scale (r = 0.70) and the ...