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
{"title":"大疱性表皮松解症的生活质量测量。欧洲皮肤病和性病学会生活质量和以患者为导向的结果专责小组和外部专家的立场声明。","authors":"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","DOIUrl":null,"url":null,"abstract":"<p><p>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.</p>","PeriodicalId":13950,"journal":{"name":"International Journal of Dermatology","volume":" ","pages":"1546-1557"},"PeriodicalIF":3.2000,"publicationDate":"2025-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"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.\",\"authors\":\"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\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><p>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.</p>\",\"PeriodicalId\":13950,\"journal\":{\"name\":\"International Journal of Dermatology\",\"volume\":\" \",\"pages\":\"1546-1557\"},\"PeriodicalIF\":3.2000,\"publicationDate\":\"2025-09-01\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"International Journal of Dermatology\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://doi.org/10.1111/ijd.17668\",\"RegionNum\":4,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"2025/1/29 0:00:00\",\"PubModel\":\"Epub\",\"JCR\":\"Q1\",\"JCRName\":\"DERMATOLOGY\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"International Journal of Dermatology","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1111/ijd.17668","RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"2025/1/29 0:00:00","PubModel":"Epub","JCR":"Q1","JCRName":"DERMATOLOGY","Score":null,"Total":0}
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.
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.
期刊介绍：
Published monthly, the International Journal of Dermatology is specifically designed to provide dermatologists around the world with a regular, up-to-date source of information on all aspects of the diagnosis and management of skin diseases. Accepted articles regularly cover clinical trials; education; morphology; pharmacology and therapeutics; case reports, and reviews. Additional features include tropical medical reports, news, correspondence, proceedings and transactions, and education.
The International Journal of Dermatology is guided by a distinguished, international editorial board and emphasizes a global approach to continuing medical education for physicians and other providers of health care with a specific interest in problems relating to the skin.
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