Health-related quality of life in adults with epidermolysis bullosa: a cross-sectional study in seven European countries using EQ-5D-5L

This multinational study provides the most extensive and current health utility data for adults with EB in Europe. Findings reveal the profound HRQoL impairment in EB, particularly in severe cases. These standardized utility values fill a major evidence gap, supporting their use in health economic evaluations, cross-disease comparisons, and policy development.