Costs of UK community care for individuals with recessive dystrophic epidermolysis bullosa: Findings of the Prospective Epidermolysis Bullosa Longitudinal Evaluation Study.

ABSTRACT:

Background

Recessive dystrophic epidermolysis bullosa (RDEB) is a rare inherited skin fragility disorder requiring multidisciplinary management. Information regarding costs of current standard treatment is scant.

Objectives

As part of a longitudinal natural history study, we explored the community care costs of UK patients with different forms of RDEB.

Methods

Fifty-nine individuals with RDEB provided detailed information on multiple facets of RDEB including disease severity scores (iscorEB, BEBS) and patient reported outcomes (quality of life evaluation in epidermolysis bullosa, iscorEB patient questionnaire). Costs data included time spent doing dressings, frequency of dressing changes, details of materials used, and paid and unpaid care.

Results

Overall cost

SUBMITTER: Jeffs E 

PROVIDER: S-EPMC10831550 | biostudies-literature | 2024 Feb

REPOSITORIES: biostudies-literature