Economic Burden of Epidermolysis Bullosa: A Scoping Review of 22 Studies

A scoping review of 22 studies from 15 countries, published between 2013 and 2024, analyzing the economic burden of the rare skin disorder epidermolysis bullosa. The review includes data from 3046 patients, reporting on direct healthcare, direct non-healthcare, and indirect costs. It was authored by figshare admin karger and last updated in May 2026.

Use Cases

• Estimate the annual economic burden per patient based on reported costs ranging from €42K to €77K
• Analyze the distribution of cost categories (direct healthcare, direct non-healthcare, indirect) across studies
• Assess time investments for patient care based on reported daily dressing change durations
• Identify gaps in economic reporting for rare diseases to inform future research design

Strengths

• Based on a systematic review of 22 studies from 15 countries
• Includes data from 3046 patients with epidermolysis bullosa
• Reports specific cost ranges (€42K-€77K annual mean total burden per patient) and time investments (up to two hours daily care)

Limitations

• The dataset is a 141.3 KB DOCX document, suggesting limited raw data scope
• Column-level documentation is absent; field semantics must be inferred after download
• Data may reflect geographic and methodological bias inherent to the source studies reviewed

Provenance

Source

figshare admin karger

Collection Method

Systematic literature search of databases including MEDLINE, Embase, Web of Science, Scopus, CINAHL, PsycINFO and EconLit

Time Range

Studies published between 2013 and 2024

Freshness

Last updated 2026-05-09 05:55:17

Geography

15 countries (specific countries not listed)