Newborn screening for cystic fibrosis - The parent perspective.

Rueegg, Corina S; Barben, Jürg; Hafen, Gaudenz M; Moeller, Alexander; Jurca, Maja; Fingerhut, Ralph; Kuehni, Claudia E (2016). Newborn screening for cystic fibrosis - The parent perspective. Journal of cystic fibrosis, 15(4), pp. 443-451. Elsevier 10.1016/j.jcf.2015.12.003

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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.

Item Type:

Journal Article (Original Article)

Division/Institute:

04 Faculty of Medicine > Pre-clinic Human Medicine > Institute of Social and Preventive Medicine (ISPM)

UniBE Contributor:

Rüegg, Corina Silvia; Barben, Jürg; Jurca, Maja and Kühni, Claudia

Subjects:

600 Technology > 610 Medicine & health
300 Social sciences, sociology & anthropology > 360 Social problems & social services

ISSN:

1569-1993

Publisher:

Elsevier

Language:

English

Submitter:

Doris Kopp Heim

Date Deposited:

12 Jan 2016 14:09

Last Modified:

04 Sep 2019 13:03

Publisher DOI:

10.1016/j.jcf.2015.12.003

PubMed ID:

26751132

Additional Information:

Rueegg and Barben contributed equally to this work.

Uncontrolled Keywords:

Cystic fibrosis False-positives Newborn screening Parents

BORIS DOI:

10.7892/boris.74820

URI:

https://boris.unibe.ch/id/eprint/74820

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