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Newborn screening for cystic fibrosis — The parent perspective
Corina S. Rueegg, Jürg Barben, Gaudenz M. Hafen, Alexander Moeller, Maja Jurca, Ralph Fingerhut, Claudia E. Kuehni, The Swiss Cystic Fibrosis Screening Group
Journal of Cystic Fibrosis, In Press, Corrected Proof, Available online 29 December 2015
Newborn screening for CF started 01/2011 in Switzerland. We investigated the parents' opinions about the information received, their feelings, and overall approval of the screening.
This is a prospective questionnaire survey of all parents of positively screened children. Parents were phoned by CF-centres and invited for diagnostic investigations. They completed a questionnaire after the visit to the CF-centre.
From 2011–2013, 246 families received the questionnaire and 138 (56%) replied. Of these 77 (60%) found the information received at birth satisfactory; 124 (91%) found the information provided in the CF-centre satisfactory. Most parents (n = 98, 78%) felt troubled or anxious when the CF-centre called, 51 (38%) remained anxious after the visit. Most parents (n = 122; 88%) were satisfied with the screening, 4 (3%) were not, and 12 (9%) were unsure.
The smooth organisation of the screening process, with personal information by a CF specialist and short delays between this information and the final diagnostic testing, might have contributed to reduce anxiety among parents. Most families were grateful that their child had been screened, and are happy with the process.