Health-related quality-of-life evaluation in epidermolysis bullosa: a scoping review protocol.

ABSTRACT:

Background

Epidermolysis bullosa (EB) is a group of rare congenital inherited skin diseases. Evaluation of health-related quality of life (HRQoL) is key to understanding the psychosocial and emotional impact on patients and their relatives or carers. The BUR-EB project aims at ascertaining the socio-economic burden of the disease, including its impact on costs and HRQoL. The aim of this scoping review is to identify which instruments or questionnaires are being used to evaluate the HRQoL of patients with EB and their relatives and carers.

Methods

A scoping review will be conducted to ascertain the HRQoL of EB patients, their family circle and caregivers over the past 12 years. The wide-ranging review question is as follows: "Which measurement tools are available for evaluati

SUBMITTER: Arias-Merino G 

PROVIDER: S-EPMC12317451 | biostudies-literature | 2025 Aug

REPOSITORIES: biostudies-literature