{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,1,9]],"date-time":"2026-01-09T19:33:27Z","timestamp":1767987207364,"version":"3.49.0"},"reference-count":24,"publisher":"Wiley","issue":"5","license":[{"start":{"date-parts":[[2014,12,3]],"date-time":"2014-12-03T00:00:00Z","timestamp":1417564800000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"funder":[{"name":"NHMRC Early Career Fellowship","award":["1036509"],"award-info":[{"award-number":["1036509"]}]},{"name":"NHMRC Senior Research Fellowship","award":["1002009"],"award-info":[{"award-number":["1002009"]}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["International Wound Journal"],"published-print":{"date-parts":[[2016,10]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:p>Epidermolysis bullosa (<jats:styled-content style=\"fixed-case\">EB<\/jats:styled-content>) consists of a spectrum of genodermatoses characterised by skin fragility and various degrees of skin and mucous membrane blistering. Minimal trauma and friction can cause extensive blistering in patients with <jats:styled-content style=\"fixed-case\">EB<\/jats:styled-content>, resulting in a number of complications. However, wound management is the main challenge for these patients because of a high risk of infection, fluid loss and potential development of aggressive squamous cell carcinoma (<jats:styled-content style=\"fixed-case\">SCC<\/jats:styled-content>). Indeed, patients with <jats:styled-content style=\"fixed-case\">EB<\/jats:styled-content> have an increased risk for developing skin cancers compared to the general population. In 2012, a home nursing programme was established in Australia to provide assistance to families or patients with severe forms of <jats:styled-content style=\"fixed-case\">EB<\/jats:styled-content>. Nursing care was provided to patients with severe <jats:styled-content style=\"fixed-case\">EB<\/jats:styled-content> during dressing changes in their homes over a period of 2 years. Both families of patients and nurses were surveyed periodically using a developed questionnaire to assess the benefits of this home nursing and its impact on the patients, their families and the nurses. Key findings included a perceived improvement in quality of life, a better provision of support and improved family life management. These findings are the first to highlight the benefits of this national home nursing programme for <jats:styled-content style=\"fixed-case\">EB<\/jats:styled-content> patients within Australia and demonstrate the continued need and benefit of home nursing for patients with severe skin blistering disorders.<\/jats:p>","DOI":"10.1111\/iwj.12394","type":"journal-article","created":{"date-parts":[[2014,12,3]],"date-time":"2014-12-03T17:21:59Z","timestamp":1417627319000},"page":"863-869","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":9,"title":["Understanding the outcomes of a home nursing programme for patients with epidermolysis bullosa: an Australian perspective"],"prefix":"10.1111","volume":"13","author":[{"given":"Louise J","family":"Stevens","sequence":"first","affiliation":[{"name":"Brightsky Australia  Sydney NSW Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Sue","family":"McKenna","sequence":"additional","affiliation":[{"name":"Dystrophic Epidermolysis Bullosa Research Association \u2013 Australia  Pittsworth QLD Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jennifer","family":"Marty","sequence":"additional","affiliation":[{"name":"Dystrophic Epidermolysis Bullosa Research Association \u2013 Australia  Pittsworth QLD Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Allison J","family":"Cowin","sequence":"additional","affiliation":[{"name":"Regenerative Medicine, Mawson Institute University of South Australia  Adelaide SA Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Zlatko","family":"Kopecki","sequence":"additional","affiliation":[{"name":"Dystrophic Epidermolysis Bullosa Research Association \u2013 Australia  Pittsworth QLD Australia"},{"name":"Regenerative Medicine, Mawson Institute University of South Australia  Adelaide SA Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2014,12,3]]},"reference":[{"key":"e_1_2_7_2_1","first-page":"135","article-title":"Epidermolysis bullosa: the challenges of wound care","volume":"15","author":"Schober\u2010Flores C","year":"2003","journal-title":"Dermatol Nurs"},{"key":"e_1_2_7_3_1","doi-asserted-by":"publisher","DOI":"10.1111\/pde.12243"},{"key":"e_1_2_7_4_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1525-1470.2010.01086.x"},{"key":"e_1_2_7_5_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-4632.2009.03910.x"},{"key":"e_1_2_7_6_1","volume-title":"Epidermolysis bullosa: an outline for professional","author":"Dystrophic Epidermolysis Bullosa Research Association (DEBRA)","year":"2002"},{"key":"e_1_2_7_7_1","volume-title":"Nursing aspects of epidermolysis bullosa: A comprehensive approach. 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