282 Larger wounds in recessive dystrophic epidermolysis bullosa patients associated with worse quality of life: Results of a global cross-sectional survey

Research paper by E. Gorell, V. Eng, D. Solis, S. Choi, J. Nazaroff, S. Li, M. de Souza, D. Murrell, M.P. Marinkovich, J. Tang

Indexed on: 17 Jun '20Published on: 01 Jul '20Published in: Journal of Investigative Dermatology


A disease severity spectrum exists in patients with recessive dystrophic epidermolysis bullosa (RDEB). We aimed to characterize how disease severity relates to wounds, comorbidities, and quality of life (QOL) in RDEB patients. RDEB patients were surveyed online via the EBCare website. QOL was measured with the Quality of Life in Epidermolysis Bullosa (QOLEB) instrument. 85 RDEB patients self-reported on 1,226 wounds: 937 recurrent wounds and 289 chronic open wounds. 52% of recurrent wounds and 30% of chronic open wounds were