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This is the first patient-led survey undertaken by CDH UK aiming for highlighting the feeding problems and their impact on the daily life of CDH survivors.<\/jats:p>\n<\/jats:sec>\n<jats:sec>\n<jats:title>Methods<\/jats:title>\n<jats:p>Answers from CDH survivors were collected through an online questionnaire (SurveyMonkey<jats:sup>\u00ae<\/jats:sup>) undertaken by CDH UK. The questionnaire contained questions about their feeding problems and support they were receiving for it.<\/jats:p>\n<\/jats:sec>\n<jats:sec>\n<jats:title>Main results<\/jats:title>\n<jats:p>Overall, 151 patients answered some parts of the survey and 102 patients completed the questionnaire. Overall, 116 (76.8%) responders reported suffering from any type of feeding issue. Gastric acid reflux (GER) and growth retardation were the commonest symptoms experienced by 97 (91.5%) and 72 (62.2%) responders, respectively. Only 18 (17.0%) responders have received any written information on feeding or details of patient\/parent support. Eighty (75.5%) responders are satisfied with the level of support they are receiving, but 78 (76.4%) answered that the whole experience associated with the disease has been very or extremely stressful.<\/jats:p>\n<\/jats:sec>\n<jats:sec>\n<jats:title>Conclusions<\/jats:title>\n<jats:p>CDH survivors frequently have various issues with feeding, which may not be adequately supported or discussed clinically. It is desirable to assist the patients to reliable resources of long-term support, including multidisciplinary team (MDT) approach.<\/jats:p>\n<\/jats:sec>","DOI":"10.1007\/s00383-019-04570-6","type":"journal-article","created":{"date-parts":[[2019,11,6]],"date-time":"2019-11-06T12:03:12Z","timestamp":1573041792000},"page":"63-68","update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":30,"title":["Long-term feeding issue and its impact on the daily life of congenital diaphragmatic hernia survivors: results of the first patient-led survey"],"prefix":"10.1007","volume":"36","author":[{"given":"Beverley","family":"Power","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Soichi","family":"Shibuya","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Brenda","family":"Lane","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Simon","family":"Eaton","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Paolo","family":"De Coppi","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2019,11,6]]},"reference":[{"key":"4570_CR1","doi-asserted-by":"publisher","first-page":"370","DOI":"10.1016\/J.SINY.2014.09.004","volume":"19","author":"MT Harting","year":"2014","unstructured":"Harting MT, Lally KP (2014) The Congenital Diaphragmatic Hernia Study Group registry update. 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