WS11.10 What words do we use when telephoning a parent to inform we suspect their baby has cystic fibrosis? The development of a phone-call script as a result of a quality improvement project

Objectives Newborn screening (NBS) for cystic fibrosis (CF) diagnosis is adopted in many countries. A protocol algorithm exists for the screening process but procedures for communicating the diagnosis are not well defined. In the majority of cases the first contact with the parents is via phone call but there are no guidelines on how to deliver the news that CF is suspected. Evaluation of our NBS service in terms of quality and user group satisfaction resulted in development of a standard phone call script. Methods Recorded verbatim interviews were obtained from 14 parents. Parents reported dissatisfaction with initial information and length of time to confirm diagnosis. Results of changed process In order to reduce the time from phone call from lab to parents receiving the diagnosis the protocol was changed to phone call with an appointment to see the consultant the next day. Anxiety about cold-calling a family with information from the blood spot test resulted in a script written to guide the call. Contents of phone call script The whole script will be discussed, key points included are: Introduction of reason for call, words to use with family dependent on the genotype, check support sources, practical information about the appointment, relevant CF information. Key Issues Explanation, Reassurance, Information. Conclusion 12 months after the introduction of the phone call initial contact, families were contacted to evaluate impact. All families rated the phone call as immediate without delay, professional and empathic, right amount of information, indicating joined up care between call from lab to appointment with consultant.