Communicating cystic fibrosis newborn screening results to parents

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: center dot Breaking bad news can have a lasting impact on parents when not done the right way. center dot Giving results of cystic fibrosis (CF) newborn screening is done differently within the UK and around the world. What is New: center dot Our parental survey revealed that the majority (92%) believed this should be done face to face and not over the telephone. center dot 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.

Automated summary

The majority of parents in a survey conducted in a London pediatric center believed that cystic fibrosis newborn screening results should be communicated face to face rather than over the telephone. There were mixed responses regarding whether parents should be informed of the genotype and CF diagnosis before the confirmatory sweat test.