- ASA 2021 Statistics and Information Systems for Policy Evaluation
- A cura di Bruno Bertaccini, Luigi Fabbris, Alessandra Petrucci
Patient-generated evidence in Epidermolysis Bullosa (EB): Development of a questionnaire to assess the Quality of Life
- Laura Benedan
- May El Hachem
- Carlotta Galeone
- Paolo Mariani
- Cinzia Pilo
- Gianluca Tadini
- © 2021 Author(s) |
- CC BY 4.0
- DOI: 10.36253/978-88-5518-461-8.38
Epidermolysis Bullosa (EB) is a group of genetic conditions that cause fragile and blistering skin. Although there are different types of EB, which differ in severity, their signs and symptoms overlap. As a result of this disorder, patients face an unbearable burden in their lives, and their Quality of Life (QoL) is negatively affected at every life cycle stage. Nevertheless, the assessment of the quality of life of these patients is scanty. This project aims to develop a patient-centered questionnaire to assess the QoL of EB patients. This tool will be a valid aid for clinicians to understand patients better and identify the areas that need more attention; moreover, it will allow them to follow the patients over time and evaluate the impact of any treatments. The methodological process to develop the questionnaire consisted of two phases: firstly, a critical review of scientific literature was performed; secondly, a pseudo-Delphi study was carried out. A multidisciplinary panel (including patients, caregivers, and clinicians) actively participated in round tables to discuss the main areas of interest. Starting from this initial set of areas and through the repetition of Delphi (up to three rounds), a gradual refinement of the statements was carried out to define a list of items to be included in an easy-to-use but meaningful questionnaire. The final patient-centered questionnaire is thus able to measure the QoL beyond the physical symptoms and the clinical evolution of the disease, encompassing functional autonomy, psycho-emotional state, social relations and the working field.
- Keywords:
- Epidermolysis Bullosa,
- Patient-centered approach,
- Quality of Life,
- Pseudo-Delphi,
University of Milano-Bicocca, Italy - ORCID: 0000-0003-0427-2487
Bambino Gesù Children's Hospital, Italy - ORCID: 0000-0002-8145-4797
University of Milano-Bicocca, Italy - ORCID: 0000-0003-1934-5167
University of Milano-Bicocca, Italy - ORCID: 0000-0002-8848-8893
REB Onlus Foundation, Italy
University of Milan, Italy - ORCID: 0000-0003-1164-2802
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Informazioni sul capitolo
Titolo del capitolo
Patient-generated evidence in Epidermolysis Bullosa (EB): Development of a questionnaire to assess the Quality of Life
Autori
Laura Benedan, May El Hachem, Carlotta Galeone, Paolo Mariani, Cinzia Pilo, Gianluca Tadini
Lingua
English
DOI
10.36253/978-88-5518-461-8.38
Opera sottoposta a peer review
Anno di pubblicazione
2021
Copyright
© 2021 Author(s)
Licenza d'uso
Licenza dei metadati
Informazioni bibliografiche
Titolo del libro
ASA 2021 Statistics and Information Systems for Policy Evaluation
Sottotitolo del libro
BOOK OF SHORT PAPERS of the on-site conference
Curatori
Bruno Bertaccini, Luigi Fabbris, Alessandra Petrucci
Opera sottoposta a peer review
Anno di pubblicazione
2021
Copyright
© 2021 Author(s)
Licenza d'uso
Licenza dei metadati
Editore
Firenze University Press
DOI
10.36253/978-88-5518-461-8
eISBN (pdf)
978-88-5518-461-8
eISBN (xml)
978-88-5518-462-5
Collana
Proceedings e report
ISSN della collana
2704-601X
e-ISSN della collana
2704-5846