{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,18]],"date-time":"2026-08-18T02:12:34Z","timestamp":1787019154124,"version":"build-2736575974"},"reference-count":61,"publisher":"SAGE Publications","issue":"7","license":[{"start":{"date-parts":[[2024,2,18]],"date-time":"2024-02-18T00:00:00Z","timestamp":1708214400000},"content-version":"unspecified","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"},{"start":{"date-parts":[[2024,2,18]],"date-time":"2024-02-18T00:00:00Z","timestamp":1708214400000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"funder":[{"DOI":"10.13039\/501100019725","name":"DEBRA Austria","doi-asserted-by":"publisher","id":[{"id":"10.13039\/501100019725","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["J Health Psychol"],"published-print":{"date-parts":[[2025,6]]},"abstract":"<jats:p>\n                    Epidermolysis bullosa (EB) is a rare disease characterised by skin fragility and a wide variety of symptoms. The Quality of Life in Epidermolysis Bullosa (QOLEB) score is an English 17-item EB-specific validated measurement tool with two dimensions: functioning and emotions. The aim of this cross-sectional study was to develop and validate a culturally adapted German QOLEB. The following steps were carried out: translation, expert evaluation, back translation, linguistic and cultural adaptation, sample-based psychometric testing and evaluation. Data analysis was performed with\n                    <jats:italic toggle=\"yes\">n<\/jats:italic>\n                    = 46 patients across all EB types. The reliability and internal consistency of the translated German QOLEB were excellent (\u03b1 = 0.901). Regarding convergent validity, the QOLEB correlated highly with the iscorEB (\n                    <jats:italic toggle=\"yes\">r<\/jats:italic>\n                    = 0.879;\n                    <jats:italic toggle=\"yes\">p<\/jats:italic>\n                    &lt; 0.001). Structural similarity with the English original version was confirmed through exploratory factor analysis. In conclusion, the German QOLEB demonstrates internal reliability and construct validity and is suitable to assess the quality of life in German-speaking EB patients.\n                  <\/jats:p>","DOI":"10.1177\/13591053231221369","type":"journal-article","created":{"date-parts":[[2024,2,19]],"date-time":"2024-02-19T00:28:20Z","timestamp":1708302500000},"page":"1476-1490","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":8,"title":["Translation, cultural adaptation and validation of the German Quality of Life in Epidermolysis Bullosa (QOLEB) questionnaire"],"prefix":"10.1177","volume":"30","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-4249-5147","authenticated-orcid":false,"given":"Gudrun","family":"Salamon","sequence":"first","affiliation":[{"name":"Sigmund Freud University, Austria"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sophie","family":"Strobl","sequence":"additional","affiliation":[{"name":"Sigmund Freud University, Austria"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ursula","family":"Field-Werners","sequence":"additional","affiliation":[{"name":"Sigmund Freud University, Austria"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Tobias","family":"Welponer","sequence":"additional","affiliation":[{"name":"EB House Austria, University Hospital of the Paracelsus Medical University Salzburg, Austria"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"D\u00e9d\u00e9e F","family":"Murrell","sequence":"additional","affiliation":[{"name":"University of New South Wales, Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Anja","family":"Diem","sequence":"additional","affiliation":[{"name":"EB House Austria, University Hospital of the Paracelsus Medical University Salzburg, Austria"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2024,2,18]]},"reference":[{"key":"e_1_3_3_2_1","doi-asserted-by":"publisher","DOI":"10.12968\/jowc.2012.21.11.528"},{"key":"e_1_3_3_3_1","doi-asserted-by":"publisher","DOI":"10.1007\/s13671-012-0020-z"},{"key":"e_1_3_3_4_1","doi-asserted-by":"publisher","DOI":"10.1038\/s41572-020-0210-0"},{"key":"e_1_3_3_5_1","doi-asserted-by":"publisher","DOI":"10.1258\/jrsm.2011.110010"},{"key":"e_1_3_3_6_1","doi-asserted-by":"publisher","DOI":"10.25259\/IJDVL_31_20"},{"key":"e_1_3_3_7_1","first-page":"423","article-title":"Cross-cultural adaptation and validation of psychological instruments: Some considerations","volume":"22","author":"Borsa JC","year":"2012","unstructured":"Borsa JC, Dam\u00e1sio BF, Bandeira DR (2012) Cross-cultural adaptation and validation of psychological instruments: Some considerations. Paid\u00e9ia 22: 423\u2013432.","journal-title":"Paid\u00e9ia"},{"key":"e_1_3_3_8_1","doi-asserted-by":"publisher","DOI":"10.1111\/bjd.16350"},{"key":"e_1_3_3_9_1","doi-asserted-by":"publisher","DOI":"10.1186\/s13023-017-0666-5"},{"key":"e_1_3_3_10_1","doi-asserted-by":"publisher","DOI":"10.1186\/1477-7525-1-60"},{"key":"e_1_3_3_11_1","first-page":"48","article-title":"Epidermolysis bullosa: How social support affects quality of life","volume":"115","author":"Butterworth S","year":"2019","unstructured":"Butterworth S, Mitchell A, Mason-Whitehead E, et al. (2019) Epidermolysis bullosa: How social support affects quality of life. Nursing Times 115: 48\u201351.","journal-title":"Nursing Times"},{"key":"e_1_3_3_12_1","doi-asserted-by":"publisher","DOI":"10.1111\/ijd.12819"},{"key":"e_1_3_3_13_1","doi-asserted-by":"publisher","DOI":"10.1159\/000496923"},{"key":"e_1_3_3_14_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jid.2017.02.239"},{"key":"e_1_3_3_15_1","doi-asserted-by":"publisher","DOI":"10.1111\/1523-1747.ep12365600"},{"key":"e_1_3_3_16_1","volume-title":"Statistical Power Analysis for the Behavioral Sciences","author":"Cohen J","year":"1988","unstructured":"Cohen J (1988) Statistical Power Analysis for the Behavioral Sciences. New York, NY: Routledge."},{"key":"e_1_3_3_17_1","doi-asserted-by":"publisher","DOI":"10.1177\/0011000016633507"},{"key":"e_1_3_3_18_1","doi-asserted-by":"publisher","DOI":"10.1086\/318638"},{"key":"e_1_3_3_19_1","doi-asserted-by":"publisher","DOI":"10.1111\/jdv.15371"},{"key":"e_1_3_3_20_1","volume-title":"Challenges of family caregivers of children and adolescents with Epidermolysis Bullosa","author":"de Azevedo Silva KCS","year":"2020","unstructured":"de Azevedo Silva KCS, Fernandes LTB, de Oliveira MVM, et al. (2020) Challenges of family caregivers of children and adolescents with Epidermolysis Bullosa. Ci\u00eancia, Cuidado e Sa\u00fade 19."},{"key":"e_1_3_3_21_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jaad.2020.03.028"},{"key":"e_1_3_3_22_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jclinepi.2014.11.021"},{"key":"e_1_3_3_23_1","doi-asserted-by":"publisher","DOI":"10.1002\/9781118758991"},{"key":"e_1_3_3_24_1","doi-asserted-by":"publisher","DOI":"10.1159\/000350009"},{"key":"e_1_3_3_25_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2230.1994.tb01167.x"},{"key":"e_1_3_3_26_1","doi-asserted-by":"publisher","DOI":"10.4306\/pi.2017.14.6.746"},{"key":"e_1_3_3_27_1","first-page":"68","article-title":"Improving clinical application of quality of life scores in epidermolysis bullosa (EB): Clinical significant outcomes in the QOLEB questionnaire","volume":"53","author":"Frew J","year":"2012","unstructured":"Frew J, Murrell D (2012) Improving clinical application of quality of life scores in epidermolysis bullosa (EB): Clinical significant outcomes in the QOLEB questionnaire. Australasian Journal of Dermatology 53: 68\u201375.","journal-title":"Australasian Journal of Dermatology"},{"key":"e_1_3_3_28_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jaad.2013.04.053"},{"key":"e_1_3_3_29_1","doi-asserted-by":"publisher","DOI":"10.1186\/s13023-017-0739-5"},{"key":"e_1_3_3_30_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2133.2009.09347.x"},{"key":"e_1_3_3_31_1","doi-asserted-by":"publisher","DOI":"10.1027\/1015-5759\/a000058"},{"key":"e_1_3_3_32_1","doi-asserted-by":"publisher","DOI":"10.1017\/S0033291798006667"},{"key":"e_1_3_3_33_1","doi-asserted-by":"publisher","DOI":"10.1007\/978-3-662-58713-3_48-1"},{"key":"e_1_3_3_34_1","doi-asserted-by":"publisher","DOI":"10.1111\/bjd.18921"},{"key":"e_1_3_3_35_1","doi-asserted-by":"publisher","DOI":"10.1111\/jdv.18637"},{"key":"e_1_3_3_36_1","doi-asserted-by":"publisher","DOI":"10.1007\/s11136-018-1844-1"},{"key":"e_1_3_3_37_1","doi-asserted-by":"publisher","DOI":"10.33235\/wpr.29.2.86-97"},{"key":"e_1_3_3_38_1","doi-asserted-by":"publisher","DOI":"10.5021\/ad.2016.28.1.6"},{"key":"e_1_3_3_39_1","volume-title":"Lebensqualit\u00e4t bei Epidermolysis Bullosa. \u00dcbersetzung und kognitives Pretesting des \u201eQuality of life in epidermolysis bullosa (QOLEB)\u201d-Questionnaires","author":"Keller A","year":"2013","unstructured":"Keller A (2013) Lebensqualit\u00e4t bei Epidermolysis Bullosa. \u00dcbersetzung und kognitives Pretesting des \u201eQuality of life in epidermolysis bullosa (QOLEB)\u201d-Questionnaires. Martin-Luther-Universit\u00e4t Halle-Wittenberg."},{"key":"e_1_3_3_40_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jclinepi.2014.11.003"},{"key":"e_1_3_3_41_1","doi-asserted-by":"publisher","DOI":"10.1027\/2512-8442\/a000016"},{"key":"e_1_3_3_42_1","doi-asserted-by":"publisher","DOI":"10.1037\/pas0000686"},{"key":"e_1_3_3_43_1","first-page":"23","article-title":"Modes of writing in a digital age: The good, the bad and the unknown","volume":"10","author":"Mangen A","year":"2018","unstructured":"Mangen A (2018) Modes of writing in a digital age: The good, the bad and the unknown. First Monday 10: 23.","journal-title":"First Monday"},{"key":"e_1_3_3_44_1","doi-asserted-by":"publisher","DOI":"10.1111\/jpc.13166"},{"key":"e_1_3_3_45_1","first-page":"1","volume-title":"COSMIN Study Design Checklist for Patient-Reported Outcome Measurement Instruments","author":"Mokkink LB","year":"2019","unstructured":"Mokkink LB, Prinsen C, Patrick DL, et al. (2019) COSMIN Study Design Checklist for Patient-Reported Outcome Measurement Instruments. Amsterdam, The Netherlands: Amsterdam Public Health Research Institute, pp.1\u201332."},{"key":"e_1_3_3_46_1","volume-title":"Psychometric Theory","author":"Nunnally JC","year":"1994","unstructured":"Nunnally JC (1994) Psychometric Theory. New York, NY: Tata McGraw-Hill Education."},{"key":"e_1_3_3_47_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.det.2010.02.008"},{"key":"e_1_3_3_48_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2516.2011.02646.x"},{"key":"e_1_3_3_49_1","doi-asserted-by":"publisher","DOI":"10.1186\/s13023-018-0944-x"},{"key":"e_1_3_3_50_1","doi-asserted-by":"publisher","DOI":"10.1111\/pde.14656"},{"key":"e_1_3_3_51_1","doi-asserted-by":"publisher","DOI":"10.1111\/pde.12317"},{"key":"e_1_3_3_52_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.det.2011.11.008"},{"key":"e_1_3_3_53_1","doi-asserted-by":"publisher","DOI":"10.1111\/bjd.12885"},{"key":"e_1_3_3_54_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2753.2010.01434.x"},{"key":"e_1_3_3_55_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2133.2009.09306.x"},{"key":"e_1_3_3_56_1","doi-asserted-by":"publisher","DOI":"10.1007\/s11136-020-02495-5"},{"key":"e_1_3_3_57_1","doi-asserted-by":"publisher","DOI":"10.2340\/00015555-0376"},{"key":"e_1_3_3_58_1","doi-asserted-by":"publisher","DOI":"10.3390\/ijerph19127059"},{"key":"e_1_3_3_59_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0277-9536(98)00009-4"},{"key":"e_1_3_3_60_1","doi-asserted-by":"publisher","DOI":"10.1177\/1359105310387954"},{"key":"e_1_3_3_61_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.ijwd.2020.05.012"},{"key":"e_1_3_3_62_1","doi-asserted-by":"publisher","DOI":"10.2340\/00015555-1758"}],"container-title":["Journal of Health Psychology"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/13591053231221369","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/full-xml\/10.1177\/13591053231221369","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/13591053231221369","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,4,29]],"date-time":"2026-04-29T08:32:23Z","timestamp":1777451543000},"score":1,"resource":{"primary":{"URL":"https:\/\/journals.sagepub.com\/doi\/10.1177\/13591053231221369"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2024,2,18]]},"references-count":61,"journal-issue":{"issue":"7","published-print":{"date-parts":[[2025,6]]}},"alternative-id":["10.1177\/13591053231221369"],"URL":"https:\/\/doi.org\/10.1177\/13591053231221369","relation":{},"ISSN":["1359-1053","1461-7277"],"issn-type":[{"value":"1359-1053","type":"print"},{"value":"1461-7277","type":"electronic"}],"subject":[],"published":{"date-parts":[[2024,2,18]]}}}