Table 4.

Participants’ Recommendations for Discussions between CF Care Teams and Patients

Category	Recommendation (Number of participants)
When to initiate discussion	• Prior to puberty (4) • Mid- to late- teenage years (14) • When patients are in a serious relationship (1)
Who should initiate discussions	• Pulmonologist or a member of CF care team (15) • Patients should be responsible for initiating such discussions or that they would be more comfortable bringing it up themselves (5)
How information should be shared	• Conversations between patients and CF provider (13)  ○ Providers should discuss with patients’ parents first (2)  ○ Supplement conversation with written or online materials (9)  ○ Supplement conversation with videos (2)  ○ Supplement with conversations between CF patients (3) • Written or online materials as primary source of information (4) • Conversations between CF patients as primary source of information (1) • Conversations between patient and social worker as primary source of information (1)
What to discuss
Education topics	• CF-specific reproductive anatomy and physiology (5) • Infertility and fertility treatment options (12) • Birth control [for both men and women] (8) • Pregnancy: i.e. changes in lung function related to pregnancy, medication safety during pregnancy and breastfeeding (8) • Genetics/heritability of CF (5) • Parent-child communication (7)
Acceptance from providers	• Providers can validate patients’ reproductive health decisions and desire for children (9) • Providers can enhance their understanding of how patients’ illness influences their life priorities (6)
Social Support	• Providers can strongly recommend for potential parents to establish robust support systems prior to having children (8) • Providers can offer patients online support forums for individuals with CF who are parents or considering parenthood (10)