Newborn screening for cystic fibrosis — The parent perspective

• Published in: Journal of cystic fibrosis 2016-07, Vol.15 (4), p.443-451
• Main Authors: Rueegg, Corina S, Barben, Jürg, Hafen, Gaudenz M, Moeller, Alexander, Jurca, Maja, Fingerhut, Ralph, Kuehni, Claudia E
• Format: Article
• Language: English
• Subjects: Adult; Consumer Behavior; Consumer Health Information - methods; Consumer Health Information - organization & administration; Consumer Health Information - standards; Cystic fibrosis; Cystic Fibrosis - diagnosis; Cystic Fibrosis - epidemiology; Cystic Fibrosis - genetics; Cystic Fibrosis - psychology; Cystic Fibrosis Transmembrane Conductance Regulator - genetics; False-positives; Female; Genetic Testing - methods; Humans; Infant, Newborn; Male; Needs Assessment; Neonatal Screening - organization & administration; Neonatal Screening - psychology; Neonatal Screening - standards; Newborn screening; Parents; Parents - psychology; Perinatal Care - methods; Perinatal Care - organization & administration; Pregnancy; Pulmonary/Respiratory; Surveys and Questionnaires; Switzerland - epidemiology
• ISSN: 1569-1993; 1873-5010
• DOI: 10.1016/j.jcf.2015.12.003

Abstract Background 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. Methods 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. Results 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. Conclusions 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.