Study Explores Sexual, Reproductive Lives of Women With CF

Researchers cite urgent need to improve access to healthcare, care delivery

Marisa Wexler, MS avatar

by Marisa Wexler, MS |

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Women with cystic fibrosis have different sexual, reproductive health care needs because their experiences are different, a new study shows. 

Women with cystic fibrosis (CF) have different experiences with sexual and reproductive health than their peers without the disease, necessitating special considerations in their care, a new study shows.

The study, “Sexual and reproductive health experiences and care of adult women with cystic fibrosis,” was published in the Journal of Cystic Fibrosis.

As medical care is continually improving, people with CF are living longer, healthier lives than has ever been possible before. With this shift, issues related to sexual and reproductive health (SRH), such as pregnancy and contraception, have emerged as important topics in CF care.

U.S. researchers surveyed 460 women with CF, ages 25 or older, to better understand SRH in women with CF compared to their peers without the disease. Each participant was asked to nominate a female friend without CF to take the survey also; 123 friends did. Results from the CF women were compared to the friends, and also to data covering 4,357 women in the general population collected as part of the U.S. National Survey of Family Growth (NSFG).

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“As [women with] CF increasingly face both general and disease-specific considerations, a better understanding of SRH experiences and care throughout the lifespan is needed,” the research team wrote.

In all three groups, nearly all (more than 96%) said they had had vaginal sex with a male. Compared to NSFG values, the CF women were older when they first had this type of sex and reported more male sexual partners in their lifetime, results that were comparable among the friend group.

Sexual, reproductive differences

Most (64%) women with CF said they always disclosed their CF status to sexual partners and nearly half (45%) reported coughing during or after sex most of the time.

Compared to the NSFG group, significantly fewer women with CF reported contracting a sexually-transmitted infection (8.4% vs. 33.3%), but rates were similar for CF patients and their friends. Fewer women with CF than in the NSFG underwent testing for these infections in the previous year (24.7% vs. 32.2%). Those rates were again similar for patients and friends.

Almost all women in all groups reported they had used contraception, but current contraception use was markedly less common for women with CF (43%) compared to the NSFG (76%) or friends (60%). Women with CF were significantly more likely than their friends to have undergone a hysterectomy (15% vs. 3%).

“Notably, [women with] CF were significantly less likely to report current contraceptive use compared to the NSFG and friends, suggesting that the difference may be driven by aspects of CF,” the researchers wrote.

Nearly one in four (24%) of the women with CF reported their CF symptoms tended to get worse during their menstrual cycle. The scientists emphasized a need for research into how to best manage these fluctuations.

Rates of urinary incontinence (unintentionally leaking urine) were higher for women with CF than their friends (50% vs. 31%), and women with CF also reported higher rates of vulvovaginal candidiasis, or vaginal yeast infection (80% vs. 56%). Rates of sexual dysfunction and intimate partner violence were comparable in both groups.

Fewer women with CF aged 25-49 reported being pregnant (37%) compared to the NSFG (78%) group. Overall, 40% of women with CF reported a prior pregnancy compared to 58% in the friend group. Among those who did get pregnant, outcomes were comparable for CF patients and their friends.

Women with CF were more likely than their friends to not be parents (54.3% vs. 38.2%), and many of the CF patients were concerned about passing the disease to children. Compared to their friends, women with CF were more likely to pursue parenthood via adoption (5.2% vs. 0.8%), and less likely to pursue it via pregnancy (32% vs. 42.3%).

Seeking SRH-related care

The rates at which women sought SRH-related care were generally higher among those with CF than the general population, but the researchers said use of this type of care among women with CF “overall remain suboptimal.” They noted less than a third of the women with CF said they’d received contraceptive counseling and less than half of those who had been pregnant had received counseling before conceiving.

Women with CF “desire routine, tailored SRH education and discussions initiated by their CF team beginning in adolescence,” the researchers wrote, stressing a need for better efforts for CF care teams to provide this care. The researchers noted that although reproductive and family care often focuses on pregnancy in general medical practice, “a broader focus on becoming a parent (through any means) may be more applicable for [women with] CF.”

Noted limitations of this study include the reliance on survey data that can be biased and is hard to verify. The researchers also noted that most CF patients in the study were not on highly effective CFTR modulators that are now widely available and may influence reproductive outcomes, and noted the results focused only on cisgender women.

“Research around SRH in CF should continue to be prioritized, especially in the age of widespread childhood initiation of [modulator therapy],” the researchers said, noting there remained an “urgent need” for better SRH care and care delivery for women with CF of all ages “by encouraging patient-provider SRH conversations” with their CF team.

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