Wanted: Better Contraceptive Counseling for Women With Congenital Heart Disease

Marlene Busko

January 04, 2017

LOS ANGELES, CA — In a large national cohort of adult women with congenital heart disease, most used contraceptives, and these were mostly barrier methods (87%) or oral contraceptives (84%)[1]. But many high-risk women were taking estrogen-containing oral contraceptives, which are not recommended, and these women had higher rates of blood clots.

These findings from a study by Pamela D Miner (University of California, Los Angeles Cardiovascular Center) and colleagues were published online December 18, 2016 in the American Journal of Cardiology.

Specifically, "despite guidelines recommending against estrogen-based contraception" in some high-risk adult congenital heart disease patients with Fontan physiology, Eisenmenger syndrome/cyanosis, or a mechanical heart valve, "this type of therapy was not uncommonly used," Miner and colleagues report. Moreover, they write, the reported incidence of thromboembolic events in these patients "is higher than expected and requires further investigation."

Most of these women with congenital heart disease (84%) had received counseling about contraception. However, only 43% had received this information from a physician, nurse practitioner, or physician assistant at an adult congenital heart center; the others received this information from their gynecologist (55%) or primary-care provider (11%).

"Contraceptive practices of women with complex congenital heart disease are highly variable, and the prevalence of blood clots while taking oral contraceptives is not insignificant, while provision of contraception counseling by adult congenital heart disease providers appears lacking," the researchers conclude.

The Full Spectrum of Contraception

More than 90% of children born with heart disease, including 9% to 15% of those with the most complex disease, survive into adulthood, Miner and colleagues explain. However, it is unclear whether the women receive counseling about contraception to prevent adverse events and unplanned high-risk pregnancies.

They aimed to examine contraceptive practices in women with congenital heart disease who were seen in nine North American centers from 2011 through 2014.

The cohort consisted of 505 women aged 18 and older who mostly had moderately complex (227 women) or very complex (183) congenital heart disease and filled in a questionnaire about contraceptive use.

The women had a median age of 33, and 80% were still menstruating.

Overall, 86% of the women used contraceptives. Less than a fifth used an intrauterine device (IUD, 18%), medroxyprogesterone acetate (15%), a vaginal ring (7%), an estrogen/progestin patch (6%), or a progestin implant (2%) or had used emergency contraception (19 %) or had undergone tubal-ligation sterilization (14%). The male partner of 9% of the women in the study had had a vasectomy.

Among women who used oral contraceptives, 30% used progestin pills, 68% used combined estrogen/progestin pills, and 14% used third-generation combination pills.

Among the subset of women with complex congenital heart disease, 82% used oral contraceptives, and of these, 39% used progestin pills and 53% used combined estrogen/progestin pills or third-generation combination pills (12%).

Of the women with Fontan physiology, 58% had used or were currently using oral contraceptives, and 28% had had thrombolysis or a thromboembolic event while using an oral contraceptive.

Overall, 4% of the cohort reported having thrombolysis or a thromboembolic event while using an oral contraceptive; these events were more common in women with very complex as opposed to less complex congenital heart disease (9% vs 1%, P=0.003).

"The main findings of our study suggest that the adult congenital heart disease population utilizes the full spectrum of contraception, with oral contraceptives being the preferred method after barrier methods," Miner and colleagues summarize.

Current national guidelines recommend that the first-line choice of contraception for all adolescent and adult women, including those at higher thrombotic risk, is an IUD or a progestin implant, they note, but these contraceptive methods were not common in this cohort.

Despite the wide use of contraceptives, 25% of the women had had an unplanned pregnancy.

Thus, specialists working at adult congenital heart disease centers need to ensure that all their female patients "receive individualized information about their contraceptive options and are aware of their risk in regard to both contraceptive use and unplanned pregnancy," Miner and colleagues urge.

Furthermore, primary-care providers and gynecologists who treat women with congenital heart disease need to work closely with the specialists in these centers to determine the best contraceptive options for these patients.

The authors reported having no relevant financial relationships.

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