Being affiliated to a cystic fibrosis centre is important for parents' everyday life

Abstract

The widespread implementation of newborn screening represents a paradigm shift in the diagnostic pathway for families having a child diagnosed with cystic fibrosis. 1 Early diagnosis is associated with a significantly improved nutritional status, increased lung function, delayed chronic lung infections and increased survival. 2 Newborn screening is therefore currently in place throughout the developed world. 3 For parents, the diagnosis of cystic fibrosis is often completely unexpected. Being told that your child has cystic fibrosis is generally a very traumatic experience, especially if the child appears healthy, causing parents to disbelieve the diagnosis. 4 Diagnosing cystic fibrosis under the newborn screening programme calls for a strong focus on the patient care pathway. How best to inform and counsel parents about the screening result has been debated on an international level. 1 The patient care pathway is the patient's journey through the healthcare system. 5 This is a complex process often