{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,1]],"date-time":"2026-10-01T09:02:44Z","timestamp":1790845364703,"version":"4.1.0"},"reference-count":69,"publisher":"Oxford University Press (OUP)","issue":"5","license":[{"start":{"date-parts":[[2025,7,15]],"date-time":"2025-07-15T00:00:00Z","timestamp":1752537600000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"funder":[{"DOI":"10.13039\/501100007601","name":"EU Horizon 2020 research","doi-asserted-by":"publisher","id":[{"id":"10.13039\/501100007601","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100004587","name":"Instituto de Salud Carlos III","doi-asserted-by":"publisher","id":[{"id":"10.13039\/501100004587","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2025,10,17]]},"abstract":"<jats:title>Abstract<\/jats:title>\n               <jats:sec>\n                  <jats:title>Background<\/jats:title>\n                  <jats:p>Epidermolysis bullosa (EB) is a group of rare, congenital, inherited skin disorders. Evaluation of health-related quality of life (HRQoL) is key to understanding a disease\u2019s psychosocial and emotional impact on patients and on their family caregivers (FCs).<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Objectives<\/jats:title>\n                  <jats:p>The aim of this scoping review was to answer a primary question \u2018What measurement tools are available for evaluation of HRQoL in EB?\u2019. We also investigated two subquestions aimed at ascertaining which EB-specific HRQoL instruments are available and which of these are used for patients with EB and their FCs.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Methods<\/jats:title>\n                  <jats:p>We conducted a search of the MEDLINE\/PubMed, Scopus and Web of Science databases for studies published from 23 February 2011 to early 2024. Working separately, two independent reviewers screened the references and evaluated the papers identified.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Results<\/jats:title>\n                  <jats:p>Of a total of 300 papers, 120 were discarded for being duplicates, 180 were screened by title and abstract, and 43 underwent a full-text peer review. Interrater reliability between the independent reviewers was good in the review by title and abstract (\u03ba = 0.75), and moderate in the full-text review (\u03ba = 0.54). The final analysis was performed on 32 papers. Three EB-specific HRQoL questionnaires were found for patients. Of these, 18 articles (56%) mentioned the Quality of Life Evaluation in Epidermolysis Bullosa (QoLEB), 2 (6%) mentioned the Instrument for Scoring Clinical Outcomes for Research of Epidermolysis Bullosa-patients (iscorEB-p), and only 1 (3%) mentioned the Infants and Toddlers Dermatology Quality of Life Epidermolysis Bullosa (InToDermQoL-EB). In contrast, only one was found for FCs, namely the Epidermolysis Bullosa Burden of Disease (EB-BoD), which was used in 9% of articles.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Conclusions<\/jats:title>\n                  <jats:p>EB-specific, dermatology-specific and generic HRQoL instruments were used in the papers reviewed. The EB-specific HRQoL questionnaires used were the iscorEB-p and QoLEB for adults and children, and the InToDermQoL-EB for children under 4\u2005years old. For FCs, the only specific questionnaire was the EB-BoD; however, its use was not very widespread.<\/jats:p>\n               <\/jats:sec>","DOI":"10.1093\/bjd\/ljaf274","type":"journal-article","created":{"date-parts":[[2025,7,15]],"date-time":"2025-07-15T18:35:23Z","timestamp":1752604523000},"page":"856-864","source":"Crossref","is-referenced-by-count":3,"title":["Health-related quality-of-life evaluation in epidermolysis bullosa: a scoping review"],"prefix":"10.1093","volume":"193","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-4478-3153","authenticated-orcid":false,"given":"Greta","family":"Arias-Merino","sequence":"first","affiliation":[{"name":"Institute of Rare Diseases Research (IIER), Instituto de Salud Carlos III (ISCIII) , Madrid ,","place":["Spain"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-5400-9057","authenticated-orcid":false,"given":"Juan","family":"Benito-Lozano","sequence":"additional","affiliation":[{"name":"Institute of Rare Diseases Research (IIER), Instituto de Salud Carlos III (ISCIII) , Madrid ,","place":["Spain"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8107-8349","authenticated-orcid":false,"given":"Mario","family":"G\u00f3mez-Martinez","sequence":"additional","affiliation":[{"name":"Institute of Rare Diseases Research (IIER), Instituto de Salud Carlos III (ISCIII) , Madrid ,","place":["Spain"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6371-6685","authenticated-orcid":false,"given":"Ana","family":"Villaverde-Hueso","sequence":"additional","affiliation":[{"name":"Institute of Rare Diseases Research (IIER), Instituto de Salud Carlos III (ISCIII) , Madrid ,","place":["Spain"]},{"name":"Centre for Biomedical Network Research on Rare Diseases (CIBERER), Instituto de Salud Carlos III (ISCIII) , Madrid ,","place":["Spain"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0138-9252","authenticated-orcid":false,"given":"Renata","family":"Linertov\u00e1","sequence":"additional","affiliation":[{"name":"Canary Islands Health Research Institute Foundation (FIISC) , Santa Cruz de Tenerife ,","place":["Spain"]},{"name":"Research Network on Chronicity, Primary Care, and Health Promotion (RICAPPS), Instituto de Salud Carlos III (ISCIII) , Madrid ,","place":["Spain"]},{"name":"Spanish Network of Agencies for Health Technology Assessment for the National Health Service (RedETS) , Madrid ,","place":["Spain"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8560-1336","authenticated-orcid":false,"given":"Ver\u00f3nica","family":"Alonso-Ferreira","sequence":"additional","affiliation":[{"name":"Institute of Rare Diseases Research (IIER), Instituto de Salud Carlos III (ISCIII) , Madrid ,","place":["Spain"]},{"name":"Centre for Biomedical Network Research on Rare Diseases (CIBERER), Instituto de Salud Carlos III (ISCIII) , Madrid ,","place":["Spain"]}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"286","published-online":{"date-parts":[[2025,7,15]]},"reference":[{"key":"2025101708270508300_ljaf274-B1","author":"Orphanet"},{"key":"2025101708270508300_ljaf274-B2","doi-asserted-by":"crossref","first-page":"420","DOI":"10.1016\/j.clindermatol.2011.01.011","article-title":"Molecular genetic assays for inherited epidermolysis bullosa","volume":"29","author":"Has","year":"2011","journal-title":"Clin 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