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
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Chernyshov,Pavel V.;Finlay,Andrew Y.;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.;Jemec,Gregor B.
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Issue Date
2025
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Article
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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.
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International journal of dermatology
Volume
64
Issue
9