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01-06-2019 | Cystic Fibrosis | Original Article

Parents’ experience with positive newborn screening results for cystic fibrosis

Authors: Inken Brockow, Uta Nennstiel

Published in: European Journal of Pediatrics | Issue 6/2019

Abstract

In Germany, screening for cystic fibrosis (CF) is part of the newborn screening since September 2016. The risk of psychological harm due to false-positive screening results is a longstanding concern. We investigated the parents’ perception of the CF screening process in Bavaria and the communication after positive screening results with a questionnaire. Until August 2018, 192 children went through a final diagnostic testing after a positive CF screening result, and 105 (54.7%) families completed the questionnaire. Of these, only 30 parents obtained information about the newborn screening by a physician, despite this being mandatory in Germany. Parents being informed by a CF specialist (28.6%) about the positive screening result were more satisfied with the given information (80.0 versus 50% informed by the maternity ward), and the delay until the final diagnostic testing was shorter. More than 3 days between the information about the screening result and the diagnostic testing was too long for 77.7% of the families.

Conclusion: Performing final diagnostic testing with only short delays and receiving satisfactory information is important. Therefore, parents should be informed directly by a CF center about positive screening results and only when sweat testing is possible within the next days.

What is Known: • The risk of psychological harm due to false-positive screening results is a longstanding concern. • Satisfactory information about the positive CF screening result seem to reduce the parental stress.
What is New: • Parents being informed directly by a CF specialist were more satisfied with the given information and the delay until the final diagnostic testing was shorter. • Our data support the concept that parents should better be informed directly by a CF specialist about positive screening results and only when sweat testing is possible within the next days to reduce parental stress.

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Title: Parents’ experience with positive newborn screening results for cystic fibrosis
Authors: Inken Brockow
Uta Nennstiel
Publication date: 01-06-2019
Publisher: Springer Berlin Heidelberg
Keywords: Cystic Fibrosis
Cystic Fibrosis
Neonatal Screening
Published in: European Journal of Pediatrics / Issue 6/2019
Print ISSN: 0340-6199
Electronic ISSN: 1432-1076
DOI: https://doi.org/10.1007/s00431-019-03343-6

Keynote webinar | Spotlight on medication adherence

Springer Medicine

Parents’ experience with positive newborn screening results for cystic fibrosis

Abstract

Keynote webinar | Spotlight on medication adherence

Springer Medicine

Abstract

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