Quality of life evaluation in epidermolysis bullosa (EB) through the development of the QOLEB questionnaire: an EB-specific quality of life instrument

Abstract

The QOLEB questionnaire is the first EB-specific QOL measurement tool, and is a valid and reliable measurement tool for the quantification of QOL in patients with various subtypes of EB. In addition, the QOLEB has potential as a sensitive instrument to monitor QOL, and to identify dimensions of QOL as targets for interventions and research.