Correlation between disease severity and quality of life in patients with epidermolysis bullosa

Abstract

There is an increased interest of medical staff to have a more objective evidence of the severity of clinical picture of the patient with epidermolysis bullosa (EB), but also about the patient's quality of life. The goal of these studies is to develop a personalized treatment, based on the patients' needs.

The aims of our study were to develop a validated and reliable quality of life questionnaire (QOLEB) in Romania, to assess the health‐related quality of life (HRQoL) in Romanian EB patients, and to perform an objective evaluation of the clinical features of patients with EB. This study was observational, analytical, prospective, transversal, cohort type.

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