Economic burden and health-related quality of life in patients with epidermolysis bullosa in Spain.

ABSTRACT:

Background

. Epidermolysis bullosa (EB) is a rare genetic skin disorder characterized by fragility of skin with appearance of acute and chronic wounds. The aim of this study was to determine the economic burden and the health-related quality of life (HRQoL) of patients with epidermolysis bullosa (EB) in Spain from a societal perspective.

Methods

. We conducted a cross-sectional, retrospective study including 62 patients with EB (62% dystrophic, 9.6% junctional, 3.2% Kindler syndrome, and 26% with simplex EB). Data were collected from questionnaires completed by patients or their caregivers. The costs were estimated, including not only direct healthcare costs but also direct non-healthcare costs and productivity losses. We compared severe EB (Dystrophic, Junctional EB and Kin

SUBMITTER: Aranda-Reneo I 

PROVIDER: S-EPMC11421099 | biostudies-literature | 2024 Sep

REPOSITORIES: biostudies-literature