"Quality of Life in Epidermolysis Bullosa" and "Epidermolysis Bullosa Burden of Disease": Italian translation, cultural adaptation, and pilot testing of two disease-specific questionnaires.
May El HachemAndrea DiociaiutiGiovanna ZambrunoTonia SamelaFrancesca FerrettiClaudia CarnevaleRenata LinertováChristine BodemerDédée F MurrellDamiano AbeniPublished in: Italian journal of pediatrics (2024)
The Italian versions of the QOLEB and EB-BoD provide valuable tools in everyday clinical practice of reference centers, and they allow the participation in multicenter international real-life observational studies as well as in controlled clinical trials. They enable the identification of disease-specific psychological and socioeconomic challenges for EB patients and their families, guiding targeted interventions to ensure appropriate and timely care.
Keyphrases
- clinical trial
- end stage renal disease
- clinical practice
- physical activity
- healthcare
- newly diagnosed
- chronic kidney disease
- prognostic factors
- palliative care
- peritoneal dialysis
- study protocol
- cross sectional
- quality improvement
- patient reported outcomes
- double blind
- drug delivery
- psychometric properties
- health insurance