25 Cystic fibrosis (CF) prevalence derived from CF newborn screening (CFNBS) in the Czech Republic: comparison of previous epidemiological and current CFNBS-based disease prevalence data

Objectives: This study reviews parental views on how they were informed of the probable CF diagnosis, following neonatal screening, and explores which method parent’s found most acceptable. Methods: Retrospective questionnaires were used to find parents’ views on how they were told that their child had a probable diagnosis of CF, who told them initially, were they told at home or by the GP followed by hospital, how acceptable was the mode of information sharing? Results: 40 parents of children with CF were studied. Most parents (9 out of 12) who had been informed by their GP recall receiving inaccurate information about the condition. All parents (28 out of 28) who had received a home visit to be told about the CF diagnosis felt that the information received had been accurate and found it easier to accept. Conclusion: Our qualitative study confirms that parents who were given accurate information by CF professionals during a home visit found this an acceptable means of being informed of the probable diagnosis of CF. Parents reported less negative recollections of that time than parents who were informed by their GP and met CF professionals in hospital. We consider that this is a superior method of sharing the information about the diagnosis of CF.