(2) Contraception and pregnancy in a cohort of women with cystic fibrosis in the era of Trikafta

Background: Women with cystic fibrosis (CF) report comparable sexual activity to women without CF.¹ Prior research among cohorts of reproductive-aged women with CF suggests only about half use contraception.² A separate study evaluating a cohort of women at three CF centers suggested that oral contraceptive pills, followed by condoms were the most popular birth control methods.³ The goal of our current study is to explore contraceptive use and pregnancy history among reproductive-aged women with CF at a single CF center in the Pacific Northwest since November 2019, when the FDA approved elexacafor/tezacaftor/ivacaftor (Trikafta).

Methods: Women with CF aged 18-45 years were recruited from the University of Washington (UW) CF Center between April-December 2021. They completed a self-administered online questionnaire regarding pregnancy history, life-time contraception and CFTR modulator use. We summarized results using descriptive statistics.

Results: A total of 72 women with CF (of average age 30.5 +/-5.5 years) completed the survey. Half (49%) were married or living with their partner and 76% had mentrual cycles. Almost all participants (96%) were currently using a CFTR Modulator, of which 97% of them were using Trikafta. One-third (n=22, 31%) reported having ever been pregnant. 45% (n=10) of women report that at least one pregnancy ended in live birth and half (n=11, 50%) reported at least one pregnancy that ended in miscarriage or abortion. 15 women (21%) reported at least one unplanned pregnancy, which is about 4 times higher than the national percentage (5%) of women who report an unplanned pregnancy annually.⁴ Less than 5% reported using medical assistance to achieve pregnancy.



All respondents at UW reported using one or more types of contraceptive during their lifetime, including those who reported having a same sex partner. Participants reported using condoms the most (n=59, 82%), followed by oral contraceptive pills (n=44, 61%), penile withdrawal (n=41, 57%), emergency contraception (n=25, 35%) and abstinence (n=23, 32%).

Conclusions: This cohort of reproductive-aged women with CF all reported contraceptive use at some point in their lifetime. Despite reported birth control use, unplanned pregnancy was common. This cohort of women with CF commonly reported using the less effective methods, such as condoms, penile withdrawal, and emergency contraception as compared to other available birth control methods. These findings suggest a need for improved contraceptive counseling and management for reproductive-aged women with CF.

Acknowledgements: Funding source: CFF GODFRE19A0, PI: Godfrey/Aitken

References: < [ [1] Kazmerski TM, Sawicki GS, Miller E, Jones KA, Abebe KZ, Tuchman LK, Ladores S, Rubenstein RC, Sagel SD, Weiner DJ, Pilewski JM. Sexual and reproductive health behaviors and experiences reported by young women with cystic fibrosis. Journal of Cystic Fibrosis. 2018 Jan 1;17(1):57-63.

[2] Roe AH, Traxler S, Schreiber CA. Contraception in women with cystic fibrosis: a systematic review of the literature. Contraception. 2016 Jan 1;93(1):3-10.

< [3] Godfrey EM, Mody S, Schwartz MR, Heltshe SL, Taylor-Cousar JL, Jain R, Sufian S, Josephy T, Aitken ML. Contraceptive use among women with cystic fibrosis: a pilot study linking reproductive health questions to the Cystic Fibrosis Foundation National Patient Registry. Contraception. 2020 Jun 1;101(6):420-6.

> [4] Finer LB, Zolna MR. Declines in unintended pregnancy in the United States, 2008–2011. New England journal of medicine. 2016 Mar 3;374(9):843-52.1