<?xml version="1.0" encoding="UTF-8"?><?xml-stylesheet type="text/xsl" href="static/style.xsl"?><OAI-PMH xmlns="http://www.openarchives.org/OAI/2.0/" xmlns:xsi="http://www.w3.org/2001/XMLSchema-instance" xsi:schemaLocation="http://www.openarchives.org/OAI/2.0/ http://www.openarchives.org/OAI/2.0/OAI-PMH.xsd"><responseDate>2026-08-13T06:09:11Z</responseDate><request verb="GetRecord" identifier="oai:repisalud.isciii.es:20.500.12105/15564" metadataPrefix="marc">https://repisalud.isciii.es/rest/oai/request</request><GetRecord><record><header><identifier>oai:repisalud.isciii.es:20.500.12105/15564</identifier><datestamp>2025-06-17T11:33:55Z</datestamp><setSpec>com_20.500.12105_2052</setSpec><setSpec>com_20.500.12105_2051</setSpec><setSpec>col_20.500.12105_19616</setSpec></header><metadata><record xmlns="http://www.loc.gov/MARC21/slim" xmlns:dcterms="http://purl.org/dc/terms/" xmlns:doc="http://www.lyncode.com/xoai" xmlns:xsi="http://www.w3.org/2001/XMLSchema-instance" xsi:schemaLocation="http://www.loc.gov/MARC21/slim http://www.loc.gov/standards/marcxml/schema/MARC21slim.xsd">
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      <subfield code="a">dc</subfield>
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   <datafield ind2=" " ind1=" " tag="720">
      <subfield code="a">Villar Hernández, Alvaro Rafael</subfield>
      <subfield code="e">author</subfield>
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   <datafield ind2=" " ind1=" " tag="720">
      <subfield code="a">Molero Alonso, Fernando</subfield>
      <subfield code="e">author</subfield>
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   <datafield ind2=" " ind1=" " tag="720">
      <subfield code="a">Aguado Marín, Álvaro Jesús</subfield>
      <subfield code="e">author</subfield>
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      <subfield code="a">Posada De la Paz, Manuel</subfield>
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   <datafield ind2=" " ind1=" " tag="260">
      <subfield code="c">2022-06-09</subfield>
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      <subfield code="a">Introduction: Epidermolysis bullosa (EB) is a relatively infrequent genodermatosis for which there is still no cure, and which impacts the quality of life of those that are affected by it. The Quality of Life evaluation in Epidermolysis Bullosa (QoLEB) questionnaire was specifically developed for English-speaking persons with EB. Objectives: To undertake the transcultural adaptation and analysis of the psychometric properties of a Spanish version of the QoLEB questionnaire. Method: We designed an observational study to implement the process of translation and validation of the scale in accordance with World Health Organisation guidelines. We assessed the content validity of the Spanish version with the participation of 33 adult patients who presented with four principal subtypes of EB. The subjects were examined and evaluated using the QoLEB and Short Form-36 (SF-36) questionnaires. Results: The Spanish version of the QoLEB displayed excellent internal consistency and content validity, α = 0.91. Test-retest reliability was likewise excellent (ps = 0.93), as was the reliability among subtypes (range ps = 0.82-0.93). The functional part of the QoLEB correlated well with the SF-36 physical component summary (ps = 0.70). The emotional QoLEB was moderately correlated with the SF-36 mental component summary (ps = 0.49). Significant discriminant validity existed between the global score of the questionnaire (p = 0.033) and the functional scale (p = 0.003). Conclusions: The Spanish version of the QoLEB questionnaire can be recommended for use in any subsequent studies seeking to assess the efficacy of possible treatments and care programmes in this group.</subfield>
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      <subfield code="a">Int J Environ Res Public Health. 2022 Jun 9;19(12):7059.</subfield>
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      <subfield code="a">10.3390/ijerph19127059</subfield>
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   <datafield ind1="8" ind2=" " tag="024">
      <subfield code="a">1660-4601</subfield>
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   <datafield ind1="8" ind2=" " tag="024">
      <subfield code="a">International journal of environmental research and public health</subfield>
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      <subfield code="a">35742308</subfield>
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      <subfield code="a">http://hdl.handle.net/20.500.12105/15564</subfield>
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      <subfield code="a">Spanish QOLEB</subfield>
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   <datafield tag="653" ind2=" " ind1=" ">
      <subfield code="a">Epidermolysis bullosa</subfield>
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      <subfield code="a">Quality of life</subfield>
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      <subfield code="a">Transcultural adaptation</subfield>
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      <subfield code="a">Validation study</subfield>
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   <datafield ind2="0" ind1="0" tag="245">
      <subfield code="a">Transcultural Validation of a Spanish Version of the Quality of Life in Epidermolysis Bullosa Questionnaire</subfield>
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