Patient-reported outcomes and quality of life in dominant dystrophic epidermolysis bullosa: A global cross-sectional survey.
Shivali FulchandNicole HarrisShufeng LiMelissa BarrigaEmily S GorellMark De SouzaDedee Frances MurrellM Peter MarinkovichVamsi Krishna YenamandraJean Y TangPublished in: Pediatric dermatology (2021)
Patient perception of disease severity in DDEB appears to be most impacted by pain, presence of chronic open wounds, difficulty swallowing, difficulty walking, and anal strictures. As research on DDEB increases, future studies focused on these symptoms might be the most impactful for DDEB patients. However, distinguishing DDEB from other subtypes remains a challenge.