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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...

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Autores principales: Tosco, Antonella, Marino, Diletta, Polizzi, Sara, Tradati, Valentina, Padoan, Rita, Giust, Claudia, Fabrizzi, Benedetta, Taccetti, Giovanni, Merli, Lucia, Terlizzi, Vito
Formato: Online Artículo Texto
Lenguaje:English
Publicado: MDPI 2023
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.
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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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