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Published on: April 11, 2018
Parental support for newborn screening for cystic fibrosis
Isabelle de Monestrol1, Agneta Bergsten Brucefors, Birgitta Sjöberg
1Stockholm CF Centre, Karolinska University Hospital Huddinge, Sweden. isabelle.demonestrol@ki.se
Aim:
To describe the attitudes among parents towards including cystic fibrosis (CF) in the newborn screening programme and towards the potential knowledge of their own carrier status.
Methods:
A questionnaire with three to five response categories and an information leaflet was posted to 143 CF parents, 3 matched diabetes and 3 matched population parents, the response rate being 85%, 74% and 70%, respectively. Comparisons between groups were made with statistical tests for independent groups.
Results:
Eighty-six percent of CF, 70% of diabetes and 77% of population parents were in favour of newborn screening for CF, 47%, 45% and 50%, respectively, wished to know their CF carrier status. The parental attitude was independent of the age of the child, as well as delay of diagnosis and well-being of the CF child at the time of diagnosis. Sixty percent of the CF parents experienced the diagnosis as delayed.
Conclusion:
Parents in Sweden support CF newborn screening. Half of the parents wanted to know their CF carrier status.
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