Communicating cystic fibrosis newborn screening results to parents
1Department of Paediatric Respiratory Medicine, Royal Brompton Hospital, Sydney Street, London, SW3 6NP, UK.
Insights
Communicating cystic fibrosis (CF) newborn screening results requires a sensitive approach. Most parents prefer face-to-face delivery by a CF nurse specialist and health visitor, not over the phone.
Area of Science:
- Pediatrics
- Genetics
- Public Health
Background:
- Effective communication of cystic fibrosis (CF) newborn screening results is crucial for parental well-being.
- Current global practices for delivering CF screening results vary significantly.
- Previous approaches have not always considered parental preferences, potentially impacting long-term outcomes.
Purpose of the Study:
- To evaluate parental preferences regarding the communication of cystic fibrosis (CF) newborn screening results.
- To inform best practices for delivering sensitive health information to families.
- To assess the feasibility and acceptance of a home-visit model for result disclosure.
Main Methods:
- A survey was administered to parents of 101 children diagnosed with CF at a London tertiary pediatric center.
- The survey achieved a 48% response rate, gathering feedback on preferred communication methods, personnel presence, and timing.
- Data analysis focused on parental responses to key questions regarding result delivery.
Main Results:
- 95% of parents indicated that CF screening results should not be communicated via phone.
- 91% preferred both partners to be present during the disclosure.
- 64% found the presence of a health visitor beneficial, and 92% accepted a delay until the next day for a sweat test.
Conclusions:
- A home visit by a cystic fibrosis (CF) nurse specialist accompanied by the family's health visitor is supported by parental feedback for delivering screening news.
- This approach prioritizes face-to-face communication and parental support, enhancing the delivery of sensitive results.
- Adapting this model presents challenges during the COVID-19 pandemic but remains a recommended practice.
Abstract:
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.
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