A Multicentre Italian Study on the Psychological Impact of an Inconclusive Cystic Fibrosis Diagnosis after Positive Neonatal Screening

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 dia...

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Bibliographic Details
Published in:Children (Basel) 2023-01, Vol.10 (2), p.177
Main Authors: Tosco, Antonella, Marino, Diletta, Polizzi, Sara, Tradati, Valentina, Padoan, Rita, Giust, Claudia, Fabrizzi, Benedetta, Taccetti, Giovanni, Merli, Lucia, Terlizzi, Vito
Format: Article
Language:English
Subjects:
Anxiety disorders
Children & youth
Communication
Cystic fibrosis
Cystic Fibrosis screen-positive inconclusive diagnosis (CFSPID)
Cystic Fibrosis transmembrane conductance regulator-related metabolic syndrome (CRMS)
Diagnosis
Diseases
Families & family life
Health aspects
Infants (Newborn)
Interviews
Medical diagnosis
Medical ethics
Metabolic syndrome
Newborn babies
newborn screening
Parent and child
Parents
Parents & parenting
Pediatrics
Perceptions
Professional ethics
Professionals
Psychological aspects
psychological impact
Psychologists
Questionnaires
Self evaluation
Values
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Summary: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. 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. 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. 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.
ISSN:2227-9067
2227-9067
DOI:10.3390/children10020177