Living with Epidermolysis Bullosa: Reviewing the Impact on Individuals' Quality of Life

Abstract

Quality of life is an abstract, multidimensional construct assessing the physical, psychological and social aspects of an individual's condition. Quality of life measurements are especially pertinent in dermatological conditions due to the high level of psychosocial impact they have on the individual. In epidermolysis bullosa (EB), generic quality of life assessments have been used to compare the burden of EB with other dermatological conditions as well as assess the social, emotional and psychological burden of living with EB. Other more recent studies have developed EB-specific quality of life measurement tools, and qualitative studies have descriptively examined the experience of living with EB. Future uses of quality of life measurements in EB may include assessment of new therapeutic interventions as well as longitudinal quality of life studies.