Publications by authors named "Ursula Field-Werners"
Background: With approximately 500 people affected in Austria, epidermolysis bullosa (EB) is a rare genetic skin disease reducing the quality of life of those affected and their relatives. The intensive efforts of the patient organisation DEBRA Austria during the last decades have led to a unique situation of those affected and their relatives, with increased support and broader knowledge about the disease in the general population. The aim of the study is to evaluate the current situation of patients and their relatives living in Austria, with a focus on burdens and helpful practices.
View Article and Find Full Text PDFEpidermolysis bullosa (EB) is a rare disease characterised by skin fragility and a wide variety of symptoms. The Quality of Life in Epidermolysis Bullosa (QOLEB) score is an English 17-item EB-specific validated measurement tool with two dimensions: functioning and emotions. The aim of this cross-sectional study was to develop and validate a culturally adapted German QOLEB.
View Article and Find Full Text PDFArticle Synopsis
- Patient-Related Outcome Measures (PROMs) like iscorEB allow patients with epidermolysis bullosa (EB) to share their personal health experiences, which is crucial for understanding this complex disease.
- The iscorEB tool includes both a clinician score and a patient questionnaire, aiming to assess and improve health outcomes for EB patients.
- The iscorEB-p demonstrated excellent reliability and validity in a study with 95 participants, confirming its usefulness in capturing the health status and daily experiences of individuals with EB.