Assessing Infertility Literacy and Knowledge Gaps Among Patients with Cystic Fibrosis

Area of Science:

• Reproductive Medicine
• Genetics and Inherited Diseases

Background:

• Increasing lifespan for cystic fibrosis (CF) patients raises reproductive health concerns.
• CF significantly impacts male and female fertility, necessitating specialized care.
• Patients may be aware of CF's effect on fertility but unaware of advanced reproductive options.

Purpose of the Study:

• To assess understanding of CF-related infertility among patients.
• To evaluate awareness of assisted reproductive technologies (ART) for conception.
• To identify gaps in reproductive healthcare for CF patients.

Main Methods:

• Anonymous survey distributed to CF patients and organizations.
• Assessed demographics, reproductive education, and fertility treatment preferences.
• Analyzed responses regarding awareness and utilization of fertility services.

Main Results:

• Survey of 40 respondents (median age 36) revealed a median age of 18 for learning about CF infertility.
• Most patients (71%) preferred education before age 24.
• Despite 43% experiencing infertility (1-3 years trying), 69% lacked semen analysis and 90% had no fertility treatments.

Conclusions:

• CF patients possess knowledge of disease-related fertility impacts.
• A significant number desiring conception lack access to ART.
• Integration of CF care teams with fertility specialists is crucial for improving conception rates.