A Cross-sectional Study on Quality of Life in EB: Validation of the Italian QOLEB and Assessment in Italian…

Cross-sectionalActa dermato-venereologica· Jun 2026

A Cross-sectional Study on Quality of Life in EB: Validation of the Italian QOLEB and Assessment in Italian Patients.

Giovanna Zambruno, Tonia Samela, Andrea Diociaiuti … BUR-EB Study Group

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DermatologyCross-sectionalClinical practiceQ1IF 2.2

About 40% of Italian epidermolysis bullosa patients report severe to very severe disease burden.

A Cross-sectional Study on Quality of Life in EB: Validation of the Italian QOLEB and Assessment in Italian Patients.

Giovanna Zambruno … BUR-EB Study Group

Acta dermato-venereologica · Jun 2026 · Q1 in Dermatology

Background

Inherited epidermolysis bullosa comprises a heterogeneous group of skin fragility diseases, presenting with a range of manifestations and complications that profoundly affect quality of life (quality of life).

Purpose

The aim of this cross sectional study, conducted as part of a European project - BUR-EB, was to test the psychometric properties of the Italian version of the QOLEB and to assess quality of life in Italian epidermolysis bullosa patients.

40%

Results

40%

over a third of patients rate their disease burden severe or worse

n = 56 Italian patients

More results

Principal component analysis showed excellent internal consistency of Italian QOLEB, and high convergent validity with the generic questionnaire EQ-5D.

Independent variables associated with worse quality of life were pain, chronic wounds, wheelchair use and patient organization membership.

Our study confirms the good psychometric properties of the Italian QOLEB.

“

Conclusion

Our study confirms the good psychometric properties of the Italian QOLEB.

A Cross-sectional Study on Quality of Life in EB: Validation of the Italian QOLEB and Assessment in Italian Patients.

A Cross-sectional Study on Quality of Life in EB: Validation of the Italian QOLEB and Assessment in Italian Patients.

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