Inconclusive Cystic Fibrosis neonatal screening results: long-term psychosocial effects on parents

Aim: Cystic Fibrosis (CF) Newborn Screening occasionally identifies neonates where a CF diagnosis can neither be confirmed nor excluded. To assess how parents of these infants cope with this ambiguous situation. Methods: Parents of 11 children with Ambiguous Diagnosis (group AD) were compared with...

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Bibliographic Details
Published in:	Acta Paediatrica Vol. 98; no. 12; pp. 1927 - 1934
Main Authors:	Perobelli, Sandra, Zanolla, Luisa, Tamanini, Anna, Rizzotti, Paolo, Maurice Assael, Baroukh, Castellani, Carlo
Format:	Journal Article
Language:	English
Published:	Oxford, UK Blackwell Publishing Ltd 01.12.2009 Blackwell
Subjects:	Adaptation, Psychological Anxiety - etiology Attitude to Health Biological and medical sciences Case-Control Studies CFTR Cystic Fibrosis - diagnosis Cystic Fibrosis - psychology Diagnosis Errors of metabolism Family Planning Services Female General aspects Humans Infant, Newborn Male Medical sciences Metabolic diseases Miscellaneous hereditary metabolic disorders Neonatal Screening - methods Neonatal Screening - psychology Newborn screening Parent-Child Relations Parents - psychology Prevention and actions Psychosocial Public health. Hygiene Public health. Hygiene-occupational medicine Sensitivity and Specificity Stress, Psychological - etiology Surveys and Questionnaires Human Pediatrics Neonatal Psychosocial Respiratory disease Parent Psychology Metabolic diseases Cystic fibrosis Medical screening Psychosocial factor Long term Genetic disease Result Newborn Newborn screening Digestive diseases Diagnosis Social aspect Public health CFTR Pancreatic disease
ISSN:	0803-5253, 1651-2227, 1651-2227
Online Access:	Get full text
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Summary:	Aim: Cystic Fibrosis (CF) Newborn Screening occasionally identifies neonates where a CF diagnosis can neither be confirmed nor excluded. To assess how parents of these infants cope with this ambiguous situation. Methods: Parents of 11 children with Ambiguous Diagnosis (group AD) were compared with parents of 11 children diagnosed with CF through neonatal screening [group Cystic Fibrosis Diagnosis (CFD)] and with parents of 11 Healthy Control children (group HC) matched for gender and age. Results: The emotional reaction to the inconclusive result was less pronounced in AD than in CFD (p = 0.003), and AD parents considered their infants as healthy as controls. Parents’ anxiety about their child’s health is stronger in CFD than in AD (p < 0.05) and HC (p < 0.001). Long‐term emotional distress was rated similarly in AD and CFD, and greater than in HC (p = 0.0003). The parent/child relationship was less influenced in AD than in the CF group (p = 0.03). Seven AD and CFD parents changed their family planning projects. Conclusion: Inconclusive neonatal screening results appear to be understood and associated with lower anxiety levels than CF diagnosis. Concern about the child’s health is similar to healthy controls and lower than in parents of CF children.
Bibliography:	ark:/67375/WNG-K51G7PM8-V istex:745F1D69C03D16FD954DF0FC1BF3D2F76AFE0E2E ArticleID:APA1485 ObjectType-Article-2 SourceType-Scholarly Journals-1 ObjectType-Feature-1 content type line 23
ISSN:	0803-5253 1651-2227 1651-2227
DOI:	10.1111/j.1651-2227.2009.01485.x