{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,17]],"date-time":"2026-08-17T15:23:09Z","timestamp":1786980189107,"version":"build-2736575974"},"reference-count":11,"publisher":"Springer Science and Business Media LLC","issue":"4","license":[{"start":{"date-parts":[[2020,10,17]],"date-time":"2020-10-17T00:00:00Z","timestamp":1602892800000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2020,10,17]],"date-time":"2020-10-17T00:00:00Z","timestamp":1602892800000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"funder":[{"DOI":"10.13039\/501100000761","name":"Imperial College London","doi-asserted-by":"crossref","id":[{"id":"10.13039\/501100000761","id-type":"DOI","asserted-by":"crossref"}]}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["Eur J Pediatr"],"published-print":{"date-parts":[[2021,4]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:p>The way results of cystic fibrosis (CF) newborn screening are communicated to parents is critical yet is done differently across the globe. We surveyed parents of 101 children in our tertiary London paediatric centre with a 48% response rate. Parental responses were as follows: 40\/42 (95%) said the information could not have been given over the phone and 39\/43 (91%) said they wanted both partners present; 27\/42 (64%) said it was helpful having the health visitor also present; and 37\/40 (92%) felt it was acceptable to wait until the next day for the sweat test. We have reduced the time from first contact to arriving in the home to 2\u20133\u00a0h.<\/jats:p>\n                  <jats:p>\n                    <jats:italic>Conclusion<\/jats:italic>\n                    : We believe that this survey backs up our approach of a home visit by a CF nurse specialist with the family\u2019s health visitor to break the news. This is challenging in the current COVID-19 pandemic.\n                    <jats:table-wrap>\n                      <jats:table>\n                        <jats:tbody>\n                          <jats:tr>\n                            <jats:td colspan=\"2\">\n                              <jats:bold>What is Known:<\/jats:bold>\n                              <jats:italic>\u2022 Breaking bad news can have a lasting impact on parents when not done the right way.<\/jats:italic>\n                              <jats:italic>\u2022 Giving results of cystic fibrosis (<\/jats:italic>\n                              CF\n                              <jats:italic>) newborn screening is done differently within the UK and around the world.<\/jats:italic>\n                              <jats:bold>What is New:<\/jats:bold>\n                              <jats:italic>\u2022 Our parental survey revealed that the majority (92%) believed this should be done face to face and not over the telephone.<\/jats:italic>\n                              <jats:italic>\u2022 There was a mixed response to whether the parents should be told the genotype (assuming the CF centre knew), and thus the CF diagnosis before the confirmatory sweat test was carried out.<\/jats:italic>\n                            <\/jats:td>\n                          <\/jats:tr>\n                        <\/jats:tbody>\n                      <\/jats:table>\n                    <\/jats:table-wrap>\n                  <\/jats:p>","DOI":"10.1007\/s00431-020-03829-8","type":"journal-article","created":{"date-parts":[[2020,10,16]],"date-time":"2020-10-16T20:02:22Z","timestamp":1602878542000},"page":"1313-1316","update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":8,"title":["Communicating cystic fibrosis newborn screening results to parents"],"prefix":"10.1007","volume":"180","author":[{"given":"L.","family":"Seddon","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"K.","family":"Dick","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"S. B.","family":"Carr","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0754-3863","authenticated-orcid":false,"given":"I. M.","family":"Balfour-Lynn","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2020,10,17]]},"reference":[{"key":"3829_CR1","unstructured":"NHS Screening Programmes. A laboratory guide to newborn screening in the UK for cystic fibrosis. 2014. https:\/\/assets.publishing.service.gov.uk\/government\/uploads\/system\/uploads\/attachment_data\/file\/397726\/Cystic_Fibrosis_Lab_Guide_February_2014_v1.0_12_.pdf"},{"key":"3829_CR2","doi-asserted-by":"publisher","first-page":"540","DOI":"10.1016\/j.jcf.2014.12.005","volume":"14","author":"T Havermans","year":"2015","unstructured":"Havermans T, Tack J, Vertommen A, Proesmans M, de Boeck K (2015) Breaking bad news, the diagnosis of cystic fibrosis in childhood. J Cyst Fibros 14:540\u2013546","journal-title":"J Cyst Fibros"},{"key":"3829_CR3","first-page":"103","volume":"35","author":"M Bryon","year":"2020","unstructured":"Bryon M (2020) Breaking the diagnosis of cystic fibrosis to parents: a process not a one-off event. Paediatr Respir Rev 35:103\u2013105","journal-title":"Paediatr Respir Rev"},{"key":"3829_CR4","doi-asserted-by":"publisher","first-page":"207","DOI":"10.1016\/j.jcf.2016.12.012","volume":"16","author":"J Barben","year":"2017","unstructured":"Barben J, Castellani C, Dankert-Roelse J, Gartner S, Kashirskaya N, Linnane B, Mayell S, Munck A, Sands D, Sommerburg O, Pybus S, Winters V, Southern KW (2017) The expansion and performance of national newborn screening programmes for cystic fibrosis in Europe. J Cyst Fibros 16:207\u2013213","journal-title":"J Cyst Fibros"},{"key":"3829_CR5","doi-asserted-by":"publisher","first-page":"614","DOI":"10.1016\/j.jcf.2019.04.004","volume":"18","author":"J Chudleigh","year":"2019","unstructured":"Chudleigh J, Ren CL, Barben J, Southern KW (2019) International approaches for delivery of positive newborn bloodspot screening results for CF. J Cyst Fibros 18:614\u2013621","journal-title":"J Cyst Fibros"},{"key":"3829_CR6","doi-asserted-by":"publisher","first-page":"753","DOI":"10.1136\/archdischild-2017-313290","volume":"103","author":"C Edmondson","year":"2018","unstructured":"Edmondson C, Grime C, Prasad A, Cowlard J, Nwokoro CEC, Ruiz G, Wallis C, Balfour-Lynn IM (2018) Cystic fibrosis newborn screening: outcome of infants with normal sweat tests. Arch Dis Child 103:753\u2013756","journal-title":"Arch Dis Child"},{"key":"3829_CR7","doi-asserted-by":"publisher","first-page":"382","DOI":"10.1177\/1367493518760734","volume":"22","author":"DJ Edwards","year":"2018","unstructured":"Edwards DJ, Wicking K, Smyth W, Shields L, Douglas T (2018) Information needs of parents of infants diagnosed with cystic fibrosis: results of a pilot study. J Child Health Care 22:382\u2013392","journal-title":"J Child Health Care"},{"key":"3829_CR8","doi-asserted-by":"publisher","first-page":"1692","DOI":"10.1542\/peds.2004-0275","volume":"115","author":"A Tluczek","year":"2005","unstructured":"Tluczek A, Koscik RL, Farrell PM, Rock MJ (2005) Psychosocial risk associated with newborn screening for cystic fibrosis: parents' experience while awaiting the sweat-test appointment. Pediatrics 115:1692\u20131703","journal-title":"Pediatrics"},{"key":"3829_CR9","doi-asserted-by":"publisher","first-page":"367","DOI":"10.1177\/1367493512443906","volume":"16","author":"N Salm","year":"2012","unstructured":"Salm N, Yetter E, Tluczek A (2012) Informing parents about positive newborn screen results: parents' recommendations. 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