Communicating cystic fibrosis newborn screening results to parents

• Published in: European journal of pediatrics Vol. 180; no. 4; pp. 1313 - 1316
• Main Authors: Seddon, L., Dick, K., Carr, S. B., Balfour-Lynn, I. M.
• Format: Journal Article
• Language: English
• Published: Berlin/Heidelberg Springer Berlin Heidelberg 01-04-2021; Springer Nature B.V
• Subjects: Attitude to Health; COVID-19; Cystic fibrosis; Cystic Fibrosis - diagnosis; Genotypes; Health Care Surveys; Health visiting; House Calls; Humans; Infant, Newborn; Medical screening; Medicine; Medicine & Public Health; Neonatal Screening; Pandemics; Parents - psychology; Pediatrics; Professional-Family Relations; Short Communication; Sweat; Truth Disclosure; Newborn screening; Cystic fibrosis; Breaking bad news
• ISSN: 0340-6199; 1432-1076
• DOI: 10.1007/s00431-020-03829-8

The way results of cystic fibrosis (CF) newborn screening are communicated to parents is critical yet is done differently across the globe. We surveyed parents of 101 children in our tertiary London paediatric centre with a 48% response rate. Parental responses were as follows: 40/42 (95%) said the information could not have been given over the phone and 39/43 (91%) said they wanted both partners present; 27/42 (64%) said it was helpful having the health visitor also present; and 37/40 (92%) felt it was acceptable to wait until the next day for the sweat test. We have reduced the time from first contact to arriving in the home to 2–3 h.
Conclusion
: We believe that this survey backs up our approach of a home visit by a CF nurse specialist with the family’s health visitor to break the news. This is challenging in the current COVID-19 pandemic.
What is Known:
• Breaking bad news can have a lasting impact on parents when not done the right way.
• Giving results of cystic fibrosis (
CF
) newborn screening is done differently within the UK and around the world.
What is New:
• Our parental survey revealed that the majority (92%) believed this should be done face to face and not over the telephone.
• There was a mixed response to whether the parents should be told the genotype (assuming the CF centre knew), and thus the CF diagnosis before the confirmatory sweat test was carried out.