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A Multicentre Italian Study on the Psychological Impact of an Inconclusive Cystic Fibrosis Diagnosis after Positive Neonatal Screening
Background: An inconclusive diagnosis of cystic fibrosis (CF) after positive newborn screening (NBS) may cause parental distress. We compared the psychological impact of CF transmembrane conductance regulator-related metabolic syndrome (CRMS)/CF screen-positive, inconclusive diagnosis (CFSPID), and...
Autores principales: | , , , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
MDPI
2023
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9955261/ https://www.ncbi.nlm.nih.gov/pubmed/36832306 http://dx.doi.org/10.3390/children10020177 |
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author | Tosco, Antonella Marino, Diletta Polizzi, Sara Tradati, Valentina Padoan, Rita Giust, Claudia Fabrizzi, Benedetta Taccetti, Giovanni Merli, Lucia Terlizzi, Vito |
author_facet | Tosco, Antonella Marino, Diletta Polizzi, Sara Tradati, Valentina Padoan, Rita Giust, Claudia Fabrizzi, Benedetta Taccetti, Giovanni Merli, Lucia Terlizzi, Vito |
author_sort | Tosco, Antonella |
collection | PubMed |
description | Background: An inconclusive diagnosis of cystic fibrosis (CF) after positive newborn screening (NBS) may cause parental distress. We compared the psychological impact of CF transmembrane conductance regulator-related metabolic syndrome (CRMS)/CF screen-positive, inconclusive diagnosis (CFSPID), and clear CF diagnosis, on parents. Methods: The participants were administered the Generalized Anxiety Disorder Scale, Patient Health Questionnaire-9, and the Italian version of the Impact of Event Scale-Revised as quantitative tools and semi-structured interviews as qualitative tools. Parental experience, child representation, relationships, future information, and perception of health status were investigated. Interviews were recorded and transcribed verbatim maintaining anonymity. Results: Thirty-two families were enrolled: sixteen with CF and CRMS/CFSPID, respectively. Anxiety and depression values were high in both groups, as were the measurement of traumatic impact subscales: avoidance, intrusiveness, and hyperarousal. The children’s health was evaluated by respective parents as being nearly healthy. Conclusions: Our results highlight negative psychological impacts, including emotional and affective representations, on parents of children with inconclusive CF diagnosis compared with those with clear diagnosis. |
format | Online Article Text |
id | pubmed-9955261 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2023 |
publisher | MDPI |
record_format | MEDLINE/PubMed |
spelling | pubmed-99552612023-02-25 A Multicentre Italian Study on the Psychological Impact of an Inconclusive Cystic Fibrosis Diagnosis after Positive Neonatal Screening Tosco, Antonella Marino, Diletta Polizzi, Sara Tradati, Valentina Padoan, Rita Giust, Claudia Fabrizzi, Benedetta Taccetti, Giovanni Merli, Lucia Terlizzi, Vito Children (Basel) Article Background: An inconclusive diagnosis of cystic fibrosis (CF) after positive newborn screening (NBS) may cause parental distress. We compared the psychological impact of CF transmembrane conductance regulator-related metabolic syndrome (CRMS)/CF screen-positive, inconclusive diagnosis (CFSPID), and clear CF diagnosis, on parents. Methods: The participants were administered the Generalized Anxiety Disorder Scale, Patient Health Questionnaire-9, and the Italian version of the Impact of Event Scale-Revised as quantitative tools and semi-structured interviews as qualitative tools. Parental experience, child representation, relationships, future information, and perception of health status were investigated. Interviews were recorded and transcribed verbatim maintaining anonymity. Results: Thirty-two families were enrolled: sixteen with CF and CRMS/CFSPID, respectively. Anxiety and depression values were high in both groups, as were the measurement of traumatic impact subscales: avoidance, intrusiveness, and hyperarousal. The children’s health was evaluated by respective parents as being nearly healthy. Conclusions: Our results highlight negative psychological impacts, including emotional and affective representations, on parents of children with inconclusive CF diagnosis compared with those with clear diagnosis. MDPI 2023-01-18 /pmc/articles/PMC9955261/ /pubmed/36832306 http://dx.doi.org/10.3390/children10020177 Text en © 2023 by the authors. https://creativecommons.org/licenses/by/4.0/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 (https://creativecommons.org/licenses/by/4.0/). |
spellingShingle | Article Tosco, Antonella Marino, Diletta Polizzi, Sara Tradati, Valentina Padoan, Rita Giust, Claudia Fabrizzi, Benedetta Taccetti, Giovanni Merli, Lucia Terlizzi, Vito A Multicentre Italian Study on the Psychological Impact of an Inconclusive Cystic Fibrosis Diagnosis after Positive Neonatal Screening |
title | A Multicentre Italian Study on the Psychological Impact of an Inconclusive Cystic Fibrosis Diagnosis after Positive Neonatal Screening |
title_full | A Multicentre Italian Study on the Psychological Impact of an Inconclusive Cystic Fibrosis Diagnosis after Positive Neonatal Screening |
title_fullStr | A Multicentre Italian Study on the Psychological Impact of an Inconclusive Cystic Fibrosis Diagnosis after Positive Neonatal Screening |
title_full_unstemmed | A Multicentre Italian Study on the Psychological Impact of an Inconclusive Cystic Fibrosis Diagnosis after Positive Neonatal Screening |
title_short | A Multicentre Italian Study on the Psychological Impact of an Inconclusive Cystic Fibrosis Diagnosis after Positive Neonatal Screening |
title_sort | multicentre italian study on the psychological impact of an inconclusive cystic fibrosis diagnosis after positive neonatal screening |
topic | Article |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9955261/ https://www.ncbi.nlm.nih.gov/pubmed/36832306 http://dx.doi.org/10.3390/children10020177 |
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