{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,2]],"date-time":"2026-07-02T18:46:36Z","timestamp":1783017996952,"version":"3.54.6"},"reference-count":29,"publisher":"Wiley","issue":"3","license":[{"start":{"date-parts":[[2022,12,12]],"date-time":"2022-12-12T00:00:00Z","timestamp":1670803200000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc-nd\/4.0\/"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Pediatric Pulmonology"],"published-print":{"date-parts":[[2023,3]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Purpose<\/jats:title><jats:p>Cystic fibrosis (CF) was added to the German newborn bloodspot screening (NBS) panel in 2016. This study assesses parental perceptions of CF\u2010NBS and confirmatory testing.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>Prospective questionnaire\u2010based survey administered to parents of children with positive CF\u2010NBS over 40 months after initiation of CF\u2010NBS in Southwest Germany. Parental perceptions were compared to results from Bavaria and Switzerland.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Questionnaires with 29 standardized questions were sent to 343 families with children born between October 2016 and January 2020. A total of 178 (51.9%) replied. Although required by law, only a minority were informed about CF\u2010NBS by a physician. The information provided about NBS was sufficient for 78% of parents. Regarding the information about positive CF\u2010NBS, 52.9% were satisfied but the majority expressed negative emotions (89.5%). While most of these were resolved after confirmatory diagnostics, 17% of parents of children with false\u2010positive CF\u2010NBS and 66.7% of children confirmed with CF remained anxious. Waiting time for sweat testing was &gt;3 days in 56.1%, considerably longer than in more centralized screening systems. Parents who waited for a maximum of 3 days were significantly more satisfied. 70.7% of parents were satisfied with the information given during confirmatory diagnostics and 91.4% were satisfied with participating in CF\u2010NBS.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusions<\/jats:title><jats:p>CF\u2010NBS stands in high regard with parents. Smooth organization, timely initiation of confirmatory testing, and professional communication are most important to limit parental anxiety. A more centralized system of confirmatory diagnostics appears advantageous in several regards as it reduces time from positive NBS to final diagnosis and increases parental satisfaction.<\/jats:p><\/jats:sec>","DOI":"10.1002\/ppul.26263","type":"journal-article","created":{"date-parts":[[2022,11,29]],"date-time":"2022-11-29T09:48:15Z","timestamp":1669715295000},"page":"844-852","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":8,"title":["German newborn screening for Cystic fibrosis: Parental perspectives and suggestions for improvements"],"prefix":"10.1002","volume":"58","author":[{"given":"Simon","family":"Gapp","sequence":"first","affiliation":[{"name":"Center for Pediatric and Adolescent Medicine, Division of Neuropediatrics and Metabolic Medicine University Hospital Heidelberg  Heidelberg Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sven F.","family":"Garbade","sequence":"additional","affiliation":[{"name":"Center for Pediatric and Adolescent Medicine, Division of Neuropediatrics and Metabolic Medicine University Hospital Heidelberg  Heidelberg Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Patrik","family":"Feyh","sequence":"additional","affiliation":[{"name":"Center for Pediatric and Adolescent Medicine, Division of Neuropediatrics and Metabolic Medicine University Hospital Heidelberg  Heidelberg Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Inken","family":"Brockow","sequence":"additional","affiliation":[{"name":"Screening Center, Bavarian Health and Food Safety Authority (LGL)  Oberschlei\u00dfheim Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Uta","family":"Nennstiel","sequence":"additional","affiliation":[{"name":"Screening Center, Bavarian Health and Food Safety Authority (LGL)  Oberschlei\u00dfheim Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Georg F.","family":"Hoffmann","sequence":"additional","affiliation":[{"name":"Center for Pediatric and Adolescent Medicine, Division of Neuropediatrics and Metabolic Medicine University Hospital Heidelberg  Heidelberg Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-3941-8944","authenticated-orcid":false,"given":"Olaf","family":"Sommerburg","sequence":"additional","affiliation":[{"name":"Translational Lung Research Center (TLRC), German Lung Research Center (DZL) University of Heidelberg  Heidelberg Germany"},{"name":"Center for Pediatric and Adolescent Medicine, Division of Pediatric Pulmonology &amp; Allergy and Cystic Fibrosis Center University Hospital Heidelberg  Heidelberg Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-7596-6529","authenticated-orcid":false,"given":"Gwendolyn","family":"Gramer","sequence":"additional","affiliation":[{"name":"Center for Pediatric and Adolescent Medicine, Division of Neuropediatrics and Metabolic Medicine University Hospital Heidelberg  Heidelberg Germany"},{"name":"University Medical Center Hamburg\u2010Eppendorf University Children's Hospital  Hamburg Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2022,12,12]]},"reference":[{"key":"e_1_2_11_2_1","doi-asserted-by":"publisher","DOI":"10.1002\/ppul.23190"},{"key":"e_1_2_11_3_1","first-page":"B12016","article-title":"Gemeinsamer Bundesausschuss. Kinder\u2010Richtlinie: Richtlinie zur Fr\u00fcherkennung von Krankheiten bei Kindern","year":"2016","journal-title":"In\u00a0BAnz AT"},{"key":"e_1_2_11_4_1","doi-asserted-by":"publisher","DOI":"10.1002\/ppul.20191"},{"key":"e_1_2_11_5_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jcf.2016.12.012"},{"key":"e_1_2_11_6_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.107.1.1"},{"key":"e_1_2_11_7_1","doi-asserted-by":"publisher","DOI":"10.1164\/rccm.200804-551OC"},{"key":"e_1_2_11_8_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jcf.2015.12.003"},{"key":"e_1_2_11_9_1","doi-asserted-by":"publisher","DOI":"10.1007\/s00431-019-03343-6"},{"key":"e_1_2_11_10_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10897-016-9959-4"},{"key":"e_1_2_11_11_1","doi-asserted-by":"publisher","DOI":"10.1007\/s00431-020-03849-4"},{"key":"e_1_2_11_12_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10545-010-9174-7"},{"key":"e_1_2_11_13_1","unstructured":"BrockowI BlankensteinO CeglarekU et al. Nationaler Screeningreport Deutschland 2018.\u00a02021. Accessed February 2021.\u00a0https:\/\/www.screening-dgns.de\/reports.php"},{"key":"e_1_2_11_14_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpeds.2008.05.005"},{"issue":"20","key":"e_1_2_11_15_1","first-page":"356","article-title":"One\u2010year evaluation of a neonatal screening program for cystic fibrosis in Switzerland","volume":"110","author":"Rueegg CS","year":"2013","journal-title":"Dtsch Arztebl Int"},{"key":"e_1_2_11_16_1","doi-asserted-by":"publisher","DOI":"10.1055\/s-0042-124187"},{"key":"e_1_2_11_17_1","volume-title":"Deutsche Gesellschaft f\u00fcr Neugeborenenscreening e.V","author":"Nennstiel U","year":"2019"},{"key":"e_1_2_11_18_1","unstructured":"R: a language and environment for statistical computing.\u00a0[Computer program]. Version 4.0.2. Vienna Austria.\u00a0R Foundation for Statistical Computing.\u00a02020. Accessed March 10 2021.\u00a0https:\/\/www.R-project.org\/"},{"key":"e_1_2_11_19_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.ymgmr.2014.07.006"},{"key":"e_1_2_11_20_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10545-006-0381-1"},{"key":"e_1_2_11_21_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2005-2633M"},{"key":"e_1_2_11_22_1","doi-asserted-by":"publisher","DOI":"10.1007\/s00431-020-03829-8"},{"key":"e_1_2_11_23_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jcf.2009.01.004"},{"key":"e_1_2_11_24_1","doi-asserted-by":"publisher","DOI":"10.1038\/gim.2012.87"},{"key":"e_1_2_11_25_1","doi-asserted-by":"publisher","DOI":"10.1177\/1367493512443906"},{"key":"e_1_2_11_26_1","doi-asserted-by":"publisher","DOI":"10.1080\/10810730.2010.522226"},{"issue":"13","key":"e_1_2_11_27_1","first-page":"192","article-title":"Sweat testing practice in Swiss hospitals","volume":"137","author":"Barben J","year":"2007","journal-title":"Swiss Med Wkly"},{"key":"e_1_2_11_28_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2016-1052"},{"key":"e_1_2_11_29_1","doi-asserted-by":"publisher","DOI":"10.1001\/jama.290.19.2564"},{"key":"e_1_2_11_30_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpeds.2009.12.003"}],"container-title":["Pediatric Pulmonology"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/ppul.26263","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/full-xml\/10.1002\/ppul.26263","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/ppul.26263","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,8,18]],"date-time":"2023-08-18T12:07:43Z","timestamp":1692360463000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1002\/ppul.26263"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2022,12,12]]},"references-count":29,"journal-issue":{"issue":"3","published-print":{"date-parts":[[2023,3]]}},"alternative-id":["10.1002\/ppul.26263"],"URL":"https:\/\/doi.org\/10.1002\/ppul.26263","archive":["Portico"],"relation":{},"ISSN":["8755-6863","1099-0496"],"issn-type":[{"value":"8755-6863","type":"print"},{"value":"1099-0496","type":"electronic"}],"subject":[],"published":{"date-parts":[[2022,12,12]]},"assertion":[{"value":"2022-03-13","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2022-11-26","order":1,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2022-12-12","order":2,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}]}}