UC San Diego

Introduction

Advancements in the care of people with cystic fibrosis (PwCF) have made discussions about reproductive health increasingly important. Rising rates of both intended and unintended pregnancies highlight the need for effective contraception counseling. Understanding current contraception use patterns and identifying priorities for contraception education amongst PwCF are therefore essential.

Methods

A web-based survey was developed in partnership with Community Voice, a virtual community of PwCF and their family members supported by the Cystic Fibrosis Foundation. The survey was distributed over a 5-week period (June-July 2025) to participants from Community Voice and Elevate. Females with cystic fibrosis aged 18 years and older were eligible to participate.

Results

Ninety-seven PwCF completed the survey, representing 27 U.S. states and four Canadian provinces. Among individuals currently using contraception, the most common methods were intrauterine devices (34%), combined oral contraceptives (28.3%), and condoms/barrier methods (24.5%). Although 90% of PwCF were not actively trying to conceive, only 55% reported using a form of birth control. Knowledge-based questions revealed persistent misconceptions about the impact of common antibiotics on contraceptive effectiveness. While most PwCF (68.1%) wanted contraception information from their CF care team, only 28.9% reported receiving such education. Side effects were a major factor in decision-making: 78.9% selected contraceptive methods based on side-effect profiles (valued more than efficacy), 68.6% reported experiencing side effects, and side effects were the leading reason for contraception discontinuation.

Conclusion

CF care teams can play a critical role in initiating and supporting conversations about contraception. Team members, including pharmacists, can provide medication counseling and help PwCF select contraceptive methods that align with their individual goals and needs.