Rare Disease and Quality of Life: Questionnaire and Indicators on Epidermolysis Bullosa in Italy

Author:

Mariani Paolo,Marletta Andrea,Zenga MariangelaORCID

Publisher

Springer Science and Business Media LLC

Reference39 articles.

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2. Abeni, D., Picardi, A., Puddu, P., Pasquini, P., & Chren, M. (2001). Lo skindex-29, un nuovo strumento per la valutazione della qualitá della vita in dermatologia: Costruzione e validazione della versione italiana. Giornale Italiano di Dermatologia e Venereologia, 136(1), 73–76.

3. Asadi-Lari, M., Tamburini, M., & Gray, D. (2004). Patients’ needs, satisfaction, and health related quality of life: Towards a comprehensive model. Health Qual Life Outcomes, 2, 32.

4. Benedan, L., Hachem, M. E., Galeone, C., Mariani, P., Pilo, C., & Tadini, G. (2022). Assessing the quality of life of patients with epidermolysis bullosa (eb): Development of a patient-centered questionnaire. In Lombardo, R., Camminatiello, I., and Simonacci, V., (Eds.), BOOK OF SHORT PAPERS - 10th International Conference IES 2022 Innovation and Society 5.0: Statistical and Economic Methodologies for Quality Assessment. PKE s.r.l.

5. Boulkedid, R., Abdoul, H., Loustau, M., Sibony, O., & Alberti, C. (2011). Using and reporting the delphi method for selecting healthcare quality indicators: A systematic review. PloS One, 6(6), e20476.

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