Corina S Rueegg1, Jürg Barben2, Gaudenz M Hafen3, Alexander Moeller4, Maja Jurca5, Ralph Fingerhut6, Claudia E Kuehni7. 1. Institute of Social and Preventive Medicine, University of Bern, Bern, Switzerland; Department of Health Sciences and Health Policy, University of Lucerne, Lucerne, Switzerland. 2. Division of Pediatric Pulmonology, Children's Hospital of Eastern Switzerland, St. Gallen, Switzerland. 3. Department of Pediatrics, Respiratory Unit, University Hospital of Lausanne (CHUV), Lausanne, Switzerland. 4. Division of Respiratory Medicine, University Children's Hospital of Zurich, Zurich, Switzerland. 5. Institute of Social and Preventive Medicine, University of Bern, Bern, Switzerland. 6. Swiss Newborn Screening Laboratory, University Children's Hospital Zurich, Zurich, Switzerland. 7. Institute of Social and Preventive Medicine, University of Bern, Bern, Switzerland. Electronic address: claudia.kuehni@ispm.unibe.ch.
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.
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.
Authors: Jane Chudleigh; Holly Chinnery; Pru Holder; Rachel S Carling; Kevin Southern; Ellinor Olander; Louise Moody; Stephen Morris; Fiona Ulph; Mandy Bryon; Alan Simpson Journal: BMJ Open Date: 2020-12-12 Impact factor: 2.692
Authors: Jane Chudleigh; Jim Bonham; Mandy Bryon; Jill Francis; Louise Moody; Steve Morris; Alan Simpson; Fiona Ulph; Kevin Southern Journal: Pilot Feasibility Stud Date: 2019-09-04
Authors: Jane Chudleigh; Holly Chinnery; Jim R Bonham; Ellinor Olander; Louise Moody; Alan Simpson; Stephen Morris; Fiona Ulph; Mandy Bryon; Kevin Southern Journal: BMJ Open Date: 2020-10-01 Impact factor: 2.692
Authors: Maartje Blom; Robbert G M Bredius; Marleen E Jansen; Gert Weijman; Evelien A Kemper; Clementien L Vermont; Iris H I M Hollink; Willem A Dik; Joris M van Montfrans; Mariëlle E van Gijn; Stefanie S Henriet; Koen J van Aerde; Wouter Koole; Arjan C Lankester; Eugènie H B M Dekkers; Peter C J I Schielen; Martine C de Vries; Lidewij Henneman; Mirjam van der Burg Journal: J Clin Immunol Date: 2020-10-18 Impact factor: 8.317