title: Newborn screening for cystic fibrosis - The parent perspective.
abstract: 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.
authors.affiliation: Institute of Social and Preventive Medicine, University of Bern, Bern, Switzerland; Department of Health Sciences and Health Policy, University of Lucerne, Lucerne, Switzerland.
authors.forename: Corina S
authors.initials: CS
authors.lastname: Rueegg
authors.affiliation: Division of Pediatric Pulmonology, Children's Hospital of Eastern Switzerland, St. Gallen, Switzerland.
authors.forename: Jürg
authors.initials: J
authors.lastname: Barben
authors.affiliation: Department of Pediatrics, Respiratory Unit, University Hospital of Lausanne (CHUV), Lausanne, Switzerland.
authors.forename: Gaudenz M
authors.initials: GM
authors.lastname: Hafen
authors.affiliation: Division of Respiratory Medicine, University Children's Hospital of Zurich, Zurich, Switzerland.
authors.forename: Alexander
authors.initials: A
authors.lastname: Moeller
authors.affiliation: Institute of Social and Preventive Medicine, University of Bern, Bern, Switzerland.
authors.forename: Maja
authors.initials: M
authors.lastname: Jurca
authors.affiliation: Swiss Newborn Screening Laboratory, University Children's Hospital Zurich, Zurich, Switzerland.
authors.forename: Ralph
authors.initials: R
authors.lastname: Fingerhut
authors.affiliation: Institute of Social and Preventive Medicine, University of Bern, Bern, Switzerland. Electronic address: claudia.kuehni@ispm.unibe.ch.
authors.forename: Claudia E
authors.initials: CE
authors.lastname: Kuehni
mesh_terms: D000328:Adult; D003258:Consumer Behavior; D054626:Consumer Health Information / Q000379:methods / Q000458:organization & administration / Q000592:standards; D003550:Cystic Fibrosis / Q000175:diagnosis / Q000453:epidemiology / Q000235:genetics / Q000523:psychology; D019005:Cystic Fibrosis Transmembrane Conductance Regulator / Q000235:genetics*; D005260:Female; D005820:Genetic Testing / Q000379:methods; D006801:Humans; D007231:Infant, Newborn; D008297:Male; D020380:Needs Assessment; D015997:Neonatal Screening / Q000458:organization & administration / Q000523:psychology / Q000592:standards; D010290:Parents / Q000523:psychology; D018743:Perinatal Care / Q000379:methods / Q000458:organization & administration; D011247:Pregnancy; D011795:Surveys and Questionnaires; D013557:Switzerland / Q000453:epidemiology
chemical_list: D019005:Cystic Fibrosis Transmembrane Conductance Regulator
keywords: Cystic fibrosis; False-positives; Newborn screening; Parents