Birth control use common with CF, but so are unplanned pregnancies
Study based on questionnaire answered by more than 550 female patients in US
Despite often using a contraceptive at some point, unintended pregnancy remains fairly common among women with cystic fibrosis (CF) in the U.S, a survey study found.
One in five women reported having an unplanned pregnancy, with the youngest being age 15, adding “to the growing evidence that suggests the importance of addressing reproductive health among females with CF starting before age 18 years and optimizing contraceptive counseling,” the researchers wrote.
The study, “Contraceptive use and pregnancy in cystic fibrosis: Survey findings from 10 cystic fibrosis centers,” was published in the Journal of Cystic Fibrosis by a team of researchers from across the U.S. It was supported by the CF Foundation and the National Institutes of Health.
CF is known to raise a risk of complications during a pregnancy
As people with CF live longer and healthier lives due to more effective disease treatments, topics like contraception have grown in importance, helping to inform patients wanting to plan or prevent a pregnancy and ensuring the best possible medical care.
Because CF affects both the respiratory and digestive systems, it can increase the risk of complications for both women and their babies. It’s recommended that patients wanting to get pregnant plan for a time when they’re as healthy as possible.
Research also suggests that an unplanned pregnancy can worsen CF symptoms after giving birth, including a decline of lung health.
“CF is still a complex medical condition in which pregnancy planning is recommended to optimize nutrition and lung function, screen for pre-existing CF-related diabetes, and offer genetic testing and counseling,” the researchers wrote.
To understand how many women with CF used contraceptives, and how well they work alongside CFTR modulators, medications that target the disease’s faulty protein, the researchers sent out an online questionnaire about contraception and pregnancies. The questionnaire was completed by 561 female patients, ages 18 to 45 (median age of 29), recruited at 10 CF centers across the U.S. between January 2021 and April 2022.
Almost all (99%) reported using at least one form of contraception at some point during their fertile years, a finding that indicates “some are getting comprehensive contraceptive counseling and are choosing methods that help them avoid unwanted pregnancy in light of their complex disease,” the researchers wrote.
Condoms were reported as most frequently used contraceptive
Nonhormonal contraceptives were more common than hormonal ones (96% vs. 74%). Among nonhormonal contraceptives, condoms were the most often used (80%) and had the longest duration of use, with a median of 6.1 years. The withdrawal method (coitus interruptus) also was widely practiced, reported by 58% of respondents.
Among hormonal contraceptives, the most commonly used were combined estrogen and progestin “birth control” pills (64.7%), with a median use of four years, followed by emergency contraception or “morning after” pills (38%). Use of hormonal intrauterine devices (IUDs) — considered one the most effective forms of contraception after sterilization, the researchers noted — was reported by 26.4%, with a median use of about three years.
Use of “morning after” pills by CF patients is higher than the percentage reported by the general U.S. public (23.5%) in a national pregnancy outcomes survey taken in 2019, “suggesting that this population may have difficulty accessing their chosen contraceptive method,” the researchers wrote.
Despite the wide use of contraceptives, 20% of respondents reported at least one unplanned pregnancy, with the youngest becoming pregnant at age 15 and the oldest at age 42. Among the 189 women who had ever become pregnant, there were a total of 319 pregnancies. Nearly two-thirds (64%) led to live births, and nearly half (48%) were unplanned.
These CF live birth and unplanned pregnancy percentages, the researchers noted, mirrored results seen in the general U.S. population survey.
CFTR modulator use not likely to diminish a contraceptive’s effectiveness
Pregnancy was about five times more likely among women ages 20 to 39 than among those 19 years old or younger. People who didn’t use contraception in the past year or currently — who were generally younger and less likely to have a partner — had the lowest pregnancy rates.
Women with CF who lived with a partner or were married and used CFTR modulators were nearly twice as likely to become pregnant than others, “although CFTR modulators themselves do not appear to decrease hormonal contraceptive effectiveness,” the researchers wrote.
A noted study limitation was that some women had to recall their contraceptive use from memory and going as far back as 13 years, which could lead to errors. Still, “understanding these trends is essential to meeting the family planning needs,” the researchers wrote, adding that “contraceptive counseling and provision should be a routine part of CF care.”
Beginning such “discussions early in adolescence is important in this population,” they added, “especially in light of findings suggesting that the mean age at first sexual intercourse is 18 years old, similar to that in the general population.”
However, “further research should evaluate whether such care should be implemented at the CF center level or whether better coordination is needed between CF care centers, family planning, and primary care providers,” the researchers concluded.
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