000150676 001__ 150676 000150676 005__ 20251017144640.0 000150676 0247_ $$2doi$$a10.1111/ijd.17668 000150676 0248_ $$2sideral$$a142811 000150676 037__ $$aART-2025-142811 000150676 041__ $$aeng 000150676 100__ $$aChernyshov, Pavel V. 000150676 245__ $$aQuality-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 000150676 260__ $$c2025 000150676 5203_ $$aABSTRACTIn 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. 000150676 540__ $$9info:eu-repo/semantics/closedAccess$$aAll rights reserved$$uhttp://www.europeana.eu/rights/rr-f/ 000150676 655_4 $$ainfo:eu-repo/semantics/article$$vinfo:eu-repo/semantics/publishedVersion 000150676 700__ $$aFinlay, Andrew Y. 000150676 700__ $$0(orcid)0000-0003-1917-6906$$aTomás-Aragonés, Lucia 000150676 700__ $$aPoot, Francoise 000150676 700__ $$aMurrell, Dedee F. 000150676 700__ $$aPustisek, Nives 000150676 700__ $$aSvensson, Ake 000150676 700__ $$0(orcid)0000-0001-5632-0351$$aMarron, Servando E.$$uUniversidad de Zaragoza 000150676 700__ $$aSampogna, Francesca 000150676 700__ $$aBewley, Anthony 000150676 700__ $$aSalavastru, Carmen 000150676 700__ $$aKoumaki, Dimitra 000150676 700__ $$aSuru, Alina 000150676 700__ $$aYordanova, Ivelina A. 000150676 700__ $$aZemskov, Serhiy 000150676 700__ $$aTsymbaliuk, Ruslan 000150676 700__ $$aOstapko, Olena 000150676 700__ $$aAugustin, Matthias 000150676 700__ $$aAbeni, Damiano 000150676 700__ $$aSzepietowski, Jacek C. 000150676 700__ $$aJemec, Gregor B. 000150676 7102_ $$11007$$2183$$aUniversidad de Zaragoza$$bDpto. Medicina, Psiqu. y Derm.$$cÁrea Dermatología 000150676 773__ $$g(2025), [12 pp.]$$pInt. j. dermatol.$$tINTERNATIONAL JOURNAL OF DERMATOLOGY$$x0011-9059 000150676 8564_ $$s295556$$uhttps://zaguan.unizar.es/record/150676/files/texto_completo.pdf$$yVersión publicada 000150676 8564_ $$s2351886$$uhttps://zaguan.unizar.es/record/150676/files/texto_completo.jpg?subformat=icon$$xicon$$yVersión publicada 000150676 909CO $$ooai:zaguan.unizar.es:150676$$particulos$$pdriver 000150676 951__ $$a2025-10-17-14:31:24 000150676 980__ $$aARTICLE