{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,7]],"date-time":"2026-08-07T17:07:18Z","timestamp":1786122438685,"version":"build-2736575974"},"reference-count":35,"publisher":"Springer Science and Business Media LLC","issue":"1","license":[{"start":{"date-parts":[[2026,5,7]],"date-time":"2026-05-07T00:00:00Z","timestamp":1778112000000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2026,5,7]],"date-time":"2026-05-07T00:00:00Z","timestamp":1778112000000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"funder":[{"name":"Fondazione REB","award":["QoL-REB"],"award-info":[{"award-number":["QoL-REB"]}]}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["Orphanet J Rare Dis"],"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>Epidermolysis bullosa (EB) is a rare inherited disorder characterized by skin and mucosal fragility, with severe implications for physical, psychological, and social well-being. Research on quality of life (QoL) in EB remains limited, particularly in Italy, where systematic patient-reported outcome measures are lacking. To address this gap, Fondazione REB ETS developed a patient-centered QoL questionnaire (QoL-REB) constructed directly by patients and caregivers, with support from clinicians and researchers.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>We conducted a cross-sectional online survey between March and April 2024, recruiting Italian EB patients and caregivers through Fondazione REB and Debra Italia mailing lists. Participants completed the QoL-REB questionnaire, which assesses seven dimensions of QoL: physical health, autonomy, emotional well-being, family dynamics, social interactions, work\/school life, and care experience. Responses were rated on a 4-point scale, with overall QoL assessed on a 0\u201310 scale.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Forty-seven individuals with EB (38 adults, 9 minors; 55% female) participated, representing multiple EB subtypes, predominantly dystrophic EB (62.4%). Mean overall QoL was rated 6\/10. Pain, itching, and reduced mobility emerged as the most frequent physical challenges. Over 70% of adults reported limited autonomy in daily activities, while children experienced difficulties with walking, dressing, and sports participation. Emotional distress was common, with patients expressing concerns about future prospects, body image, and dependence on others; 43% reported a need for psychological support. Family burden was evident, with both adults and minors perceiving themselves as a strain on relatives. Social limitations, workplace and school difficulties, and dissatisfaction with healthcare services\u2014particularly a lack of EB-specific expertise in non-reference centers\u2014were also reported.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>This first Italian patient-led assessment highlights the pervasive and multidimensional burden of EB on QoL. Findings underscore the need for integrated, patient-centered care models that combine medical, psychological, and social support. The QoL-REB questionnaire provides a novel, comprehensive tool to capture the lived experience of EB and may serve as a framework for international adaptation and implementation.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1186\/s13023-026-04321-6","type":"journal-article","created":{"date-parts":[[2026,5,7]],"date-time":"2026-05-07T00:55:11Z","timestamp":1778115311000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":3,"title":["Quality of life in children and adults with epidermolysis bullosa: the QoL-REB explorative study"],"prefix":"10.1186","volume":"21","author":[{"given":"Cinzia","family":"Pilo","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Laura","family":"Benedan","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Valentina","family":"Morra","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"El Hachem","family":"M.","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Gianluca","family":"Tadini","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Giuseppina","family":"Annicchiarico","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Michela","family":"Brena","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sophie","family":"Guez","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Lucia","family":"Lospalluti","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-0958-5124","authenticated-orcid":false,"given":"Isabella L. 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It is now: May El \u2013 first name; Hachem \u2013 last name. it should be: El Hashem \u2013 first name; M. \u2013 last names.","order":7,"name":"change_details","label":"Change Details","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"7 August 2026","order":8,"name":"change_date","label":"Change Date","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"Correction","order":9,"name":"change_type","label":"Change Type","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"A Correction to this paper has been published:","order":10,"name":"change_details","label":"Change Details","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"https:\/\/doi.org\/10.1186\/s13023-026-04529-6","URL":"https:\/\/doi.org\/10.1186\/s13023-026-04529-6","order":11,"name":"change_details","label":"Change Details","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"Only individuals (or caregivers of minors) who had previously provided consent to be contacted were invited to participate in the study. For participants under 18 years of age, consent was obtained from a parent or legal guardian, who completed the survey on their behalf.","order":1,"name":"Ethics","label":"Consent to participate","group":{"name":"EthicsHeading","label":"Declarations"}},{"value":"The authors declare that they have no competing interests.","order":2,"name":"Ethics","label":"Competing interests","group":{"name":"EthicsHeading","label":"Declarations"}}],"article-number":"181"}}