Date of Award

Spring 2022

Document Type

Open Access Thesis

Department

Genetic Counseling

First Advisor

Victoria Vincent

Abstract

Many men with Cystic Fibrosis (CF) are infertile; however, few studies have evaluated fertility outlook of men with CF since the advent of modulator therapy. As predicted survival and quality of life improve, family planning is an area of increased interest for the CF community. The current study surveyed men with CF to explore their outlook on fertility, family planning, and birth control use with the option to receive a home fertility test and follow-up interview with study staff.

Seventy-five men with CF completed the survey and 53 (71%) believed they were likely infertile. Most recalled learning about infertility between age 10- 20 years and from a healthcare provider. Forty participants (53%) reported a previous clinical sperm count, with 27 (68%) reporting infertility. Four participants completed at-home fertility tests, all of which were negative. These participants found home testing valuable and easy to complete.

Seventeen participants (23%) indicated they had a child through various means: biological, donor conceived, adopted, or stepchild. Most participants (65%) indicated they wanted a child in the future. Men who have taken modulators were significantly more likely to desire a child in the future than those who have not (77% versus 53%), and to feel that they would enjoy parenting a child (87% versus 67%).

Using condoms for pregnancy and/or sexually transmitted infection prevention at any time was reported by most heterosexual participants (52/70, 74%). However, some participants (39/70, 56%) reported not feeling obligated to use birth control due to the likelihood of infertility.

Rates of known or assumed CF related male infertility are lower in this cohort than expected. Our findings highlight opportunities for improved fertility education including family building options, safe sex practices, and access to semen analysis. Preliminary data support potential utility of home semen analysis, which should be explored further in future research.

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