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Psychological Impact of NBS for CF
Newborn screening for cystic fibrosis has resulted in diagnosis often before symptoms are recognised, leading to benefits including reduced disease severity, decreased burden of care, and lower costs. The psychological impact of this often unsought diagnosis on the parents of seemingly well children...
Autores principales: | , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
MDPI
2020
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7422999/ https://www.ncbi.nlm.nih.gov/pubmed/33073024 http://dx.doi.org/10.3390/ijns6020027 |
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author | Chudleigh, Jane Chinnery, Holly |
author_facet | Chudleigh, Jane Chinnery, Holly |
author_sort | Chudleigh, Jane |
collection | PubMed |
description | Newborn screening for cystic fibrosis has resulted in diagnosis often before symptoms are recognised, leading to benefits including reduced disease severity, decreased burden of care, and lower costs. The psychological impact of this often unsought diagnosis on the parents of seemingly well children is less well understood. The time during which the screening result is communicated to families but before the confirmatory test results are available is recognised as a period of uncertainty and it is this uncertainty that can impact most on parents. Evidence suggests this may be mitigated against by ensuring the time between communication and confirmatory testing is minimized and health professionals involved in communicating positive newborn screening results and diagnostic results for cystic fibrosis to families are knowledgeable and able to provide appropriate reassurance. This is particularly important in the case of false positive results or when the child is given a Cystic Fibrosis Screen Positive, Inconclusive Diagnosis designation. However, to date, there are no formal mechanisms in place to support health professionals undertaking this challenging role, which would enable them to meet the expectations set out in specific guidance. |
format | Online Article Text |
id | pubmed-7422999 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2020 |
publisher | MDPI |
record_format | MEDLINE/PubMed |
spelling | pubmed-74229992020-10-15 Psychological Impact of NBS for CF Chudleigh, Jane Chinnery, Holly Int J Neonatal Screen Review Newborn screening for cystic fibrosis has resulted in diagnosis often before symptoms are recognised, leading to benefits including reduced disease severity, decreased burden of care, and lower costs. The psychological impact of this often unsought diagnosis on the parents of seemingly well children is less well understood. The time during which the screening result is communicated to families but before the confirmatory test results are available is recognised as a period of uncertainty and it is this uncertainty that can impact most on parents. Evidence suggests this may be mitigated against by ensuring the time between communication and confirmatory testing is minimized and health professionals involved in communicating positive newborn screening results and diagnostic results for cystic fibrosis to families are knowledgeable and able to provide appropriate reassurance. This is particularly important in the case of false positive results or when the child is given a Cystic Fibrosis Screen Positive, Inconclusive Diagnosis designation. However, to date, there are no formal mechanisms in place to support health professionals undertaking this challenging role, which would enable them to meet the expectations set out in specific guidance. MDPI 2020-03-30 /pmc/articles/PMC7422999/ /pubmed/33073024 http://dx.doi.org/10.3390/ijns6020027 Text en © 2020 by the authors. Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (http://creativecommons.org/licenses/by/4.0/). |
spellingShingle | Review Chudleigh, Jane Chinnery, Holly Psychological Impact of NBS for CF |
title | Psychological Impact of NBS for CF |
title_full | Psychological Impact of NBS for CF |
title_fullStr | Psychological Impact of NBS for CF |
title_full_unstemmed | Psychological Impact of NBS for CF |
title_short | Psychological Impact of NBS for CF |
title_sort | psychological impact of nbs for cf |
topic | Review |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7422999/ https://www.ncbi.nlm.nih.gov/pubmed/33073024 http://dx.doi.org/10.3390/ijns6020027 |
work_keys_str_mv | AT chudleighjane psychologicalimpactofnbsforcf AT chinneryholly psychologicalimpactofnbsforcf |