Table II.

Medical Issues to Discuss with the Family at the Initial Visit at the CF Center

• Assess emotional and educational status of the family

• Explain how we know the infant has CF

• Explain basic genetic concepts

• Convey the most difficult facts about the disease:

○ Currently CF is a life-limiting disorder

○ Most males are infertile

○ CF is a chronic condition requiring ongoing daily care

• Provide a general description of CF symptoms and what causes them

• Introduce the care team concept

○ Parents and primary care provider are part of care team

○ CF Foundation as part of the team

• Emphasize the need to get CF information from reliable sources:

○ CF Care team

○ CF Foundation’s website (www.cff.org)

○ Explain that incorrect and outdated information about CF is common (e.g. from friends and family, in books, and on the web)

• Give the family hope

○ Life expectancy has been steadily increasing

○ Many new treatments are actively being studied

■ These are likely to be of direct benefit to your child in his or her life

■ This is why prevention is especially important now

■ This is why we need to follow this child in our clinic; consider giving the family a copy of the Monitoring and Care Recommendations (see Table III)

• Describe how to contact the CF care center with questions or concerns; schedule the next visit before the family leaves