Quality-of-Life measurement in Epidermolysis Bullosa. Position statement of the European Academy of Dermatology and Venereology Task Force on Quality of Life and Patient-Oriented Outcomes and External Experts

Chernyshov, Pavel V., Finlay, Andrew Y. ORCID: https://orcid.org/0000-0003-2143-1646, Tomas-Aragones, Lucia, Poot, Francoise, Murrell, Dedee F., Pustisek, Nives, Svensson, Ake, Marron, Servando E., Sampogna, Francesca, Bewley, Anthony, Salavastru, Carmen, Koumaki, Dimitra, Suru, Alina, Yordanova, Ivelina A., Zemskov, Serhiy, Tsymbaliuk, Ruslan, Ostapko, Olena, Augustin, Matthias, Abeni, Damiano, Szepietowski, Jacek C. and Jemec, Gregor B. 2025. Quality-of-Life measurement in Epidermolysis Bullosa. Position statement of the European Academy of Dermatology and Venereology Task Force on Quality of Life and Patient-Oriented Outcomes and External Experts. International Journal of Dermatology 64 (9) , pp. 1546-1557. 10.1111/ijd.17668 Item availability restricted.

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Abstract

In this paper, the European Academy of Dermatology and Venereology (EADV) Task Force on Quality of Life (QoL) and Patient-Oriented Outcomes presents its position statements on health-related (HR) QoL assessment in epidermolysis bullosa (EB). The EADV TF on QoL and Patient-Oriented Outcomes recommends the use of the EB-specific instrument QOLEB in patients over the age of 10 years and, in addition to the QOLEB, the use of iscorEB-p in moderate-to-severe EB; the IntoDermQoL proxy instrument with its EB-specific module should be used in children aged under 5 years. The EB-specific instrument iscorEB-p, and the dermatology-specific instrument CDLQI may measure HRQoL in children with EB aged from 5 to 10 years. Dermatology-specific and/or generic HRQoL instruments should be used to compare the impact on QoL of EB with other diseases; family QoL of patients with EB should be studied using the EB-specific EB-BoD, dermatology-specific family measures, and/or generic family QoL instruments.

Item Type:	Article
Date Type:	Publication
Status:	Published
Schools:	Schools > Medicine
Publisher:	Wiley
ISSN:	0011-9059
Date of First Compliant Deposit:	5 February 2025
Date of Acceptance:	29 January 2025
Last Modified:	16 Sep 2025 13:00
URI:	https://orca.cardiff.ac.uk/id/eprint/175950

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