(320) Fertility and Family Planning Perspectives among Men with Cystic Fibrosis

Background: Most men with cystic fibrosis (CF) are infertile due to congenital absence of the vas deferens [1], though sperm retrieval for use in in vitro fertilization allows biological paternity for some [2]. As survival and quality of life improve in the modulator era, family planning is an area of increased interest. Few studies have evaluated fertility outlook among men with CF since the advent of modulator therapy.

Methods: An IRB approved online survey elicited fertility education, testing, birth control practice, parenthood status and family planning goals. Survey invitations were posted with permission to CF groups on Facebook. Participants voluntarily completed the survey. Eligibility included age 18+ years, male, assigned male at birth, diagnosed with CF and English fluency. Responses were analyzed using descriptive statistics. Chi-square tests of independence assessed parenthood goals and outlook by modulator status.

Results: A convenience sample of 75 eligible men participated (Table 1).

Most (71%) believed that they were likely infertile and learned about infertility between age 10-20 years (69%). A medical provider was the most common source of education (46.7%), followed by self-educated (24%). Forty men (53%) had prior clinical semen analysis, with 68% reporting infertility.

Seventeen (23%) indicated they had a child through various means: biological (10), donor-conceived (1), adopted (3), or stepchild (4). Fifty-eight respondents indicated whether they want (more) children in the future; 31 (53%) did. Men with modulator use were more likely to desire a future child (62.5%) than those without (42.3%), but the difference was not significant (X²(1, N=58)=2.35, p=.13); however men with modulator use were significantly more likely to feel they would enjoy parenthood (87% vs. 66.7%; X²(1, N=75)=4.49, p=.03).

Many men indicated that that infertility is a significant burden of CF (68%) and some (52%) altered family plans based on fertility perceptions. Participants have felt worried they may not be able to have a biological child (57%), been embarrassed about infertility (47%), worried about impact on romantic relationships (56%) and avoided disclosing fertility information to romantic partners (39%).

Among heterosexual respondents, 56% did not feel obligated to use birth control due to likelihood of infertility, though most (74%) reported condom use at any time in the past.

Conclusions: Men with CF identify infertility to be a significant disease burden. This study sheds light on the patient experience and perspectives regarding fertility and family plans. Rates of known or assumed CF-related male infertility are lower in this cohort than expected. Findings highlight opportunities for improved education on fertility, family building options, safe sex practices, and access to semen analysis. These topics should be more broadly studied among men with CF.

Acknowledgements: This work was supported by the NSGC CF SIG.

References: [1] Ahmad A, Ahmed A, Patrizio P. Cystic fibrosis and fertility. Current Opinion in Obstetrics and Gynecology. 2013;25(3).
[2] McBride JA, Kohn TP, Mazur DJ, Lipshultz LI, Coward RM. Sperm retrieval and intracytoplasmic sperm injection outcomes in men with cystic fibrosis disease versus congenital bilateral absence of the vas deferens. Asian Journal of Andrology. 2021;23(2).