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Girls With CF Need Reproductive Counseling, Study Asserts

Female adolescents with cystic fibrosis (CF) should be offered contraceptive counseling and informed about pregnancy risks, a long-term study shows.

Adding a gynecologist to the medical team following female patients with CF could improve their quality of care, the researchers suggested.

CF poses reproductive health concerns for women, including high‐risk pregnancies and interactions with medications that may lead to contraceptive failure. Reproductive health counseling is very important, but barriers to providing it include lack of time, knowledge, or provider discomfort.

To address these issues, researchers from Seattle Children’s Hospital assessed the rate at which health providers counseled adolescents with CF about their contraceptive options and pregnancy risks.

The study included 33 female patients with CF (mean age 15.56, range 10 to 21 years), followed from March 2008 to March 2018. Among these, 16 were non‐sexually active (48.5%) and 17 sexually active (51.5%).

During this 10-year period, on average, patients had two gynecology appointments (range 0 to 14), 23 outpatient pulmonology encounters (range 2 to 62) and 15 inpatient hospitalizations (range 0 to 55).

Regarding medication, eight patients were on mycophenolate mofetil to prevent organ transplant rejection and only two were counseled about its teratogenicity — the capacity to cause defects in the fetus. Additionally, 15 patients were on CFTR modulators and eight on Orkambi (ivacaftor/lumacaftor).

Thirteen patients were counseled about pregnancy risks with CF and nine were referred to a pediatric and adolescent gynecology clinic. Sexual activity was first reported by pulmonologists in 15 cases, by gynecologists in seven patients, and by pediatricians in four. The average age of the first sexual intercourse was 16.7 years.

All sexually active patients used contraception, the most common being condoms (82.4%) and combined oral contraceptive pills (76.5%).

Most patients used both condoms and hormonal contraception (64.7%) and three patients used pills only (17.6%). Also, 10 patients tried more than one hormonal contraceptive pill, but reasons for changing were not consistently logged.

One patient was on Orkambi and hormonal contraception simultaneously; however, there was no record that she was informed that the medication decreases its effectiveness.

Regarding anti-contraceptive devices, from the nine patients counseled about long-acting reversible contraception (LARC), seven had a device placed. One patient tried two devices, levonorgestrel intrauterine device and etonorgestrel implant.

Only eight of the 17 sexually active patients were counseled regarding pregnancy risks with CF. Six pregnancies occurred in five patients, resulting in five live births and one termination. After birth, only half of the patients were prescribed postpartum contraception.

In the group of non‐sexually active patients, two were on hormonal management with oral contraceptive pills for heavy menstrual period or prophylactic contraception.

“Given the potential of maternal and fetal complications in sexually active adolescent women with CF, quality improvement measures like incorporating a gynecologist into the CF treatment team can help improve the quality of care given to affected individuals,” the researchers wrote.

Researchers noted some limitations to their findings, including small patient size, the retrospective nature of the study, lack of information regarding sexual history, possible inaccuracy in documented age of first sexual intercourse, and variety in the quality of records. Also, researchers recognize that the sexually active group could be larger, though not documented.

“Female adolescents with CF should be routinely screened for sexual activity, counseled on all available contraception options including LARC, informed about the teratogenic effects of certain medications they may be taking, and understand that pregnancy can cause exacerbations of their medical condition,” the researchers concluded.


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