{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,23]],"date-time":"2026-10-23T10:37:28Z","timestamp":1792751848593,"version":"4.5.0"},"reference-count":24,"publisher":"Wiley","issue":"2","license":[{"start":{"date-parts":[[2022,12,3]],"date-time":"2022-12-03T00:00:00Z","timestamp":1670025600000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"funder":[{"DOI":"10.13039\/501100006126","name":"Hospital for Sick Children","doi-asserted-by":"publisher","id":[{"id":"10.13039\/501100006126","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Pediatric Dermatology"],"published-print":{"date-parts":[[2023,3]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Background\/Objectives<\/jats:title><jats:p>Gastrostomy tubes (G\u2010tubes) are a feasible intervention for nutritional support in patients with epidermolysis bullosa (EB) who suffer from gastrointestinal involvement. However, some parents may be apprehensive about this surgical intervention. The purpose of this study is to assess caregiver satisfaction and experiences after G\u2010tube insertion in children with EB.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>Nine institutions sent an anonymous 89\u2010item online questionnaire to caregivers of patients with EB and active G\u2010tubes during an 8\u2010week study period. The questionnaire consisted of eight sections and was formatted with multiple choice, Likert scales, dichotomous scales (yes\/no), and free text.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Twenty caregiver surveys were completed. All caregivers were parents (100%). The average age of G\u2010tube placement was 2.7\u2009years (SD: 2.1, range 0\u20138) and duration of the G\u2010tube utilization was an average of 12.0\u2009years (SD: 7.8, range 1\u201325). EB subtypes were dystrophic (<jats:italic>n<\/jats:italic>\u00a0=\u00a015\/20, 75%), junctional (<jats:italic>n<\/jats:italic>\u00a0=\u00a03\/20, 15%), and simplex (<jats:italic>n<\/jats:italic>\u00a0=\u00a02\/10, 10%). Almost all caregivers (<jats:italic>n<\/jats:italic>\u00a0=\u00a018\/20, 90%) reported high levels of satisfaction with G\u2010tube management (scores\u2009&gt;\u200920 on the modified SAGA\u20108 scale). More than half of caregivers (<jats:italic>n<\/jats:italic>\u00a0=\u00a012\/20, 60%) reported that, retrospectively, they would have desired earlier adoption of the G\u2010tube. Caregivers rated mealtimes as more enjoyable and easier both for themselves and the individual with EB post\u2010G\u2010tube placement.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion<\/jats:title><jats:p>The survey demonstrates a high rate of satisfaction for G\u2010tube use among caregivers of patients with EB across varying ages and household settings. The free\u2010text responses provide unique insight into caregiver's individual experiences regarding G\u2010tubes to be considered for future studies.<\/jats:p><\/jats:sec>","DOI":"10.1111\/pde.15207","type":"journal-article","created":{"date-parts":[[2022,12,3]],"date-time":"2022-12-03T11:45:03Z","timestamp":1670067903000},"page":"270-275","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":6,"title":["Gastrostomy tube feeding in epidermolysis bullosa: A <scp>multi\u2010center<\/scp> assessment of caregiver satisfaction"],"prefix":"10.1111","volume":"40","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-1471-5619","authenticated-orcid":false,"given":"Elana P.","family":"Kleinman","sequence":"first","affiliation":[{"name":"Rady Children's Hospital of San Diego  San Diego California USA"},{"name":"University of California San Diego School of Medicine  San Diego California USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Antonia","family":"Reimer\u2010Taschenbrecker","sequence":"additional","affiliation":[{"name":"Northwestern University Feinberg School of Medicine  Chicago Illinois USA"},{"name":"Ann and Robert H. 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