{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,5,6]],"date-time":"2026-05-06T15:25:00Z","timestamp":1778081100235,"version":"3.51.4"},"reference-count":36,"publisher":"Oxford University Press (OUP)","issue":"1","license":[{"start":{"date-parts":[[2024,1,23]],"date-time":"2024-01-23T00:00:00Z","timestamp":1705968000000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/academic.oup.com\/pages\/standard-publication-reuse-rights"}],"funder":[{"DOI":"10.13039\/100002825","name":"DEBRA","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100002825","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2024,6,20]]},"abstract":"<jats:title>Abstract<\/jats:title>\n               <jats:sec>\n                  <jats:title>Background<\/jats:title>\n                  <jats:p>In contrast to clinical diagnosis via external examination, patient-related outcome measures (PROMs) allow access to patients\u2019 internal perceptions. In the case of epidermolysis bullosa (EB) \u2013 a rare disease characterized by a wide variety of symptoms and individual disease courses \u2013 it is important to integrate the patient\u2019s perspective into diagnostic processes. The Instrument for Scoring Clinical Outcomes of Research for EB (iscorEB) is an EB-specific measurement tool, combining a clinician score (iscorEB-c) and a patient questionnaire (iscorEB-p).<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Objectives<\/jats:title>\n                  <jats:p>The aim of this study is to establish the iscorEB-p as an independent PROM tool by exploring its psychometric properties.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Methods<\/jats:title>\n                  <jats:p>Sample-based psychometric testing and evaluation were performed on data collected via a multinational online cross-sectional study.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Results<\/jats:title>\n                  <jats:p>Data analysis was performed with n = 95 participants across all EB types. The reliability and internal consistency of the iscorEB-p was excellent (\u03b1 = 0.90). Principal component analysis with a varimax rotation resulted in a two-factor solution, explaining 55.6% of the total variance, with the distinct factors \u2018everyday life functioning\u2019 and \u2018specific EB symptoms\u2019. Convergent validity was shown by high correlations to the Satisfaction With Life Scale (r = \u20130.52, P &amp;lt; 0.001), the Quality of Life in Epidermolysis Bullosa questionnaire (r = 0.72, P &amp;lt; 0.001) and the Epidermolysis Bullosa Family Burden of Disease questionnaire (r = \u20130.73, P &amp;lt; 0.001).<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Conclusions<\/jats:title>\n                  <jats:p>The iscorEB-p is a reliable and valid instrument to assess patient-reported health status of people with EB.<\/jats:p>\n               <\/jats:sec>","DOI":"10.1093\/bjd\/ljae019","type":"journal-article","created":{"date-parts":[[2024,1,23]],"date-time":"2024-01-23T16:50:51Z","timestamp":1706028651000},"page":"75-81","source":"Crossref","is-referenced-by-count":5,"title":["Psychometric Properties of the Instrument for Scoring Clinical Outcomes of Research for Epidermolysis Bullosa\u00a0patient score (iscorEB-p): a patient-reported outcome measure"],"prefix":"10.1093","volume":"191","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-4249-5147","authenticated-orcid":false,"given":"Gudrun","family":"Salamon","sequence":"first","affiliation":[{"name":"Faculty of Psychology, Sigmund Freud University Vienna , Austria"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-9815-120X","authenticated-orcid":false,"given":"Sophie","family":"Strobl","sequence":"additional","affiliation":[{"name":"Faculty of Psychology, Sigmund Freud University Vienna , Austria"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-4308-8116","authenticated-orcid":false,"given":"Ursula","family":"Field-Werners","sequence":"additional","affiliation":[{"name":"Faculty of Psychology, Sigmund Freud University Vienna , Austria"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1603-2050","authenticated-orcid":false,"given":"Anja","family":"Diem","sequence":"additional","affiliation":[{"name":"EB House Austria, Department of Dermatology and Allergology, University Hospital of the Paracelsus Medical University Salzburg , Austria"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-7679-3981","authenticated-orcid":false,"given":"Agnes","family":"Schwieger-Briel","sequence":"additional","affiliation":[{"name":"Pediatric Skin Center, Department of Pediatric Dermatology, University Children\u2019s Hospital Zurich , Switzerland"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-2136-5661","authenticated-orcid":false,"given":"Elena","family":"Pope","sequence":"additional","affiliation":[{"name":"Division of Pediatric Dermatology, The Hospital for Sick Children, University of 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