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 DOI Open Access
Pavel V. Chernyshov, A.Y. Finlay, L. Tomás-Aragonés

et al.

International Journal of Dermatology, Journal Year: 2025, Volume and Issue: unknown

Published: Jan. 29, 2025

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

Language: Английский

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 DOI Open Access
Pavel V. Chernyshov, A.Y. Finlay, L. Tomás-Aragonés

et al.

International Journal of Dermatology, Journal Year: 2025, Volume and Issue: unknown

Published: Jan. 29, 2025

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

Language: Английский

Citations

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