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Health-related quality-of-life evaluation in epidermolysis bullosa: a scoping review protocol
Greta Arias-Merino1, Juan Benito-Lozano1,2, Renata Linertová3,4,5
1Institute of Rare Diseases Research (IIER), Instituto de Salud Carlos III (ISCIII), 28029, Madrid, Spain.
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 evaluation of HRQoL in EB?" A search will be made in the MEDLINE, WOS and Scopus databases, and the Joanna Briggs Institute methodology will be applied. The data and findings will be shown in tables and in narrative form, in line with the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR).
Discussion:
This scoping review will provide an overview of evidence on the use of HRQoL instruments, both in patients with EB and in relatives and carers. The results of this scoping review will offer a guidance to the researchers to measure the health and well-being of EB patients.
