A Multicentre Italian Study on the Psychological Impact of an Inconclusive Cystic Fibrosis Diagnosis after Positive Neonatal Screening
Antonella Tosco,
Diletta Marino,
Sara Polizzi,
Valentina Tradati,
Rita Padoan,
Claudia Giust,
Benedetta Fabrizzi,
Giovanni Taccetti,
Lucia Merli,
Vito Terlizzi
Affiliations
Antonella Tosco
Paediatric Unit, Cystic Fibrosis Regional Reference Center, Department of Translational Medical Sciences, University of Naples Federico II, 80131 Naples, Italy
Diletta Marino
Freelance Psychologist, 50139 Florence, Italy
Sara Polizzi
Paediatric Unit, Cystic Fibrosis Regional Reference Center, Department of Translational Medical Sciences, University of Naples Federico II, 80131 Naples, Italy
Valentina Tradati
Cystic Fibrosis Regional Support Center, University of Brescia, ASST Spedali Civili of Brescia, 25123 Brescia, Italy
Rita Padoan
Cystic Fibrosis Regional Support Center, University of Brescia, ASST Spedali Civili of Brescia, 25123 Brescia, Italy
Claudia Giust
Cystic Fibrosis Regional Reference Center, Mother-Child Department, United Hospitals, 60131 Ancona, Italy
Benedetta Fabrizzi
Cystic Fibrosis Regional Reference Center, Mother-Child Department, United Hospitals, 60131 Ancona, Italy
Giovanni Taccetti
Meyer Children’s Hospital IRCCS, Cystic Fibrosis Regional Reference Center, Department of Paediatric Medicine, Viale Gaetano Pieraccini 24, 50139 Florence, Italy
Lucia Merli
Azienda Sanitaria Toscana Centro, Palliative Care Unit, 50100 Florence, Italy
Vito Terlizzi
Meyer Children’s Hospital IRCCS, Cystic Fibrosis Regional Reference Center, Department of Paediatric Medicine, Viale Gaetano Pieraccini 24, 50139 Florence, Italy
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.
