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

Pavel V. Chernyshov; Andrew Y. Finlay; Lucia Tomas-Aragones; Francoise Poot; Dedee F. Murrell; Nives Pustisek; Ake Svensson; Servando E. Marron; Francesca Sampogna; Anthony Bewley; Carmen Salavastru; Dimitra Koumaki; Alina Suru; Ivelina A. Yordanova; Serhiy Zemskov; Ruslan Tsymbaliuk; Olena Ostapko; Matthias Augustin; Damiano Abeni; Jacek C. Szepietowski; Gregor B. Jemec

doi:10.1111/ijd.17668

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

Pavel V. Chernyshov^*, Andrew Y. Finlay, Lucia Tomas-Aragones, Francoise Poot, Dedee F. Murrell, Nives Pustisek, Ake Svensson, Servando E. Marron, Francesca Sampogna, Anthony Bewley, Carmen Salavastru, Dimitra Koumaki, Alina Suru, Ivelina A. Yordanova, Serhiy Zemskov, Ruslan Tsymbaliuk, Olena Ostapko, Matthias Augustin, Damiano Abeni, Jacek C. SzepietowskiGregor B. Jemec

^*Corresponding author af dette arbejde

3 Citationer (Scopus)

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.

Originalsprog	Engelsk
Tidsskrift	International Journal of Dermatology
Vol/bind	64
Udgave nummer	9
Sider (fra-til)	1546-1557
Antal sider	12
ISSN	0011-9059
DOI	https://doi.org/10.1111/ijd.17668
Status	Udgivet - sep. 2025
Udgivet eksternt	Ja

Adgang til dokumentet

10.1111/ijd.17668

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Link to publication in Scopus

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Citationsformater

Chernyshov, P. V., Finlay, A. Y., Tomas-Aragones, L., Poot, F., Murrell, D. F., Pustisek, N., Svensson, A., Marron, S. E., Sampogna, F., Bewley, A., Salavastru, C., Koumaki, D., Suru, A., Yordanova, I. A., Zemskov, S., Tsymbaliuk, R., Ostapko, O., Augustin, M., Abeni, D., ... Jemec, G. 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), 1546-1557. https://doi.org/10.1111/ijd.17668

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.; Tomas-Aragones, Lucia et al.
I: International Journal of Dermatology, Bind 64, Nr. 9, 09.2025, s. 1546-1557.

Publikation: Bidrag til tidsskrift › Review › peer review

Chernyshov, PV, Finlay, AY, Tomas-Aragones, L, Poot, F, Murrell, DF, Pustisek, N, Svensson, A, Marron, SE, Sampogna, F, Bewley, A, Salavastru, C, Koumaki, D, Suru, A, Yordanova, IA, Zemskov, S, Tsymbaliuk, R, Ostapko, O, Augustin, M, Abeni, D, Szepietowski, JC & Jemec, GB 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, bind 64, nr. 9, s. 1546-1557. https://doi.org/10.1111/ijd.17668

Chernyshov PV, Finlay AY, Tomas-Aragones L, Poot F, Murrell DF, Pustisek N et al. 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. 2025 sep.;64(9):1546-1557. doi: 10.1111/ijd.17668

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title = "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",

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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author = "Chernyshov, {Pavel V.} and Finlay, {Andrew Y.} and Lucia Tomas-Aragones and Francoise Poot and Murrell, {Dedee F.} and Nives Pustisek and Ake Svensson and Marron, {Servando E.} and Francesca Sampogna and Anthony Bewley and Carmen Salavastru and Dimitra Koumaki and Alina Suru and Yordanova, {Ivelina A.} and Serhiy Zemskov and Ruslan Tsymbaliuk and Olena Ostapko and Matthias Augustin and Damiano Abeni and Szepietowski, {Jacek C.} and Jemec, {Gregor B.}",

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AU - Chernyshov, Pavel V.

AU - Finlay, Andrew Y.

AU - Tomas-Aragones, Lucia

AU - Poot, Francoise

AU - Murrell, Dedee F.

AU - Pustisek, Nives

AU - Svensson, Ake

AU - Marron, Servando E.

AU - Sampogna, Francesca

AU - Bewley, Anthony

AU - Salavastru, Carmen

AU - Koumaki, Dimitra

AU - Suru, Alina

AU - Yordanova, Ivelina A.

AU - Zemskov, Serhiy

AU - Tsymbaliuk, Ruslan

AU - Ostapko, Olena

AU - Augustin, Matthias

AU - Abeni, Damiano

AU - Szepietowski, Jacek C.

AU - Jemec, Gregor B.

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KW - Humans

KW - Quality of Life

KW - Severity of Illness Index

KW - Surveys and Questionnaires

KW - Venereology/standards

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