Consensus-based guidelines for the provision of palliative and end-of-life care for people living with epidermolysis bullosa.

ABSTRACT:

Background

Inherited epidermolysis bullosa (EB) is a cluster of rare, genetic skin and mucosal fragility disorders with multi-system and secondary effects, in which blistering and erosions occur in response to friction/mechanical trauma. Considering the incurable and potentially life-limiting nature of the condition and the challenges posed by its symptoms, a palliative approach to EB-related care is necessary. However, knowledge and experience related to the provision of EB palliative care is minimal. Evidence-based, best care guidelines are needed to establish a base of knowledge for practitioners to prevent or ease suffering while improving comfort at all stages of the illness, not just the end of life.

Methods

This consensus guideline (CG) was begun at the request of DEB

SUBMITTER: Popenhagen MP 

PROVIDER: S-EPMC10476410 | biostudies-literature | 2023 Sep

REPOSITORIES: biostudies-literature