Table 4

Communication with families of infants identified as CRMS/CFSPID

1.Explain the process that led to the designation of CRMS/CFSPID, and how they have arrived at this point.
2.Emphasise that CRMS/CFSPID infants are well, and that most will remain well.
3.Explain that although their child does not have a definitive diagnosis of CF, they will continue to be seen in the CF clinic by CF clinicians.
4.Explain what the designation of CRMS/CFSPID means for their child and the purpose of regular clinic visits in their preschool years.
5.Acknowledge that for some infants, clinical features associated with CF may evolve over a long timeframe but provide education about what symptoms to be vigilant of and when to seek advice.
6.Describe local experience if possible, including data on the proportion of CRMS/CFSPID infants who have converted to a CF diagnosis.
7.Outline the risk for a child with CRMS/CFSPID developing CFTR-RD later in life (especially CBAVD and pancreatitis).
8.Signpost to appropriate internet sites and support groups.
9.Provide contact details for the CF team, give opportunities for questions and ensure a follow-up clinic is scheduled before they leave.

Adapted from [3, 8].