Communicating cystic fibrosis newborn screening results to parents
File(s)Seddon2021_Article_CommunicatingCysticFibrosisNew.pdf (195.73 KB)
Published version
Author(s)
Seddon, L
Dick, K
Carr, SB
Balfour-Lynn, IM
Type
Journal Article
Abstract
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 2-3 h.Conclusion: We believe that this survey backs up our approach of a home visit by a CF nurse specialist with the family's health visitor to break the news. This is challenging in the current COVID-19 pandemic. What is Known: • Breaking bad news can have a lasting impact on parents when not done the right way. • Giving results of cystic fibrosis (CF) newborn screening is done differently within the UK and around the world. What is New: • Our parental survey revealed that the majority (92%) believed this should be done face to face and not over the telephone. • 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.
Date Issued
2021-04-01
Date Acceptance
2020-10-05
Citation
European Journal of Pediatrics, 2021, 180, pp.1313-1316
ISSN
0340-6199
Publisher
Springer
Start Page
1313
End Page
1316
Journal / Book Title
European Journal of Pediatrics
Volume
180
Copyright Statement
© The Author(s) 2020. This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/.
License URL
Identifier
https://www.ncbi.nlm.nih.gov/pubmed/33067713
PII: 10.1007/s00431-020-03829-8
Subjects
Breaking bad news
Cystic fibrosis
Newborn screening
Publication Status
Published
Coverage Spatial
Germany
Date Publish Online
2020-10-17