EXECUTIVE SUMMARY

Healthcare providers need to focus on educating women with sickle cell disease (SCD) about different types of contraception, efficacy, and risks while addressing disease-specific concerns.

  • Women with SCD are at risk for pregnancy complications, such as higher risks for maternal and fetal mortality, pre-eclampsia, and intrauterine growth restriction.
  • The first line of contraception for women with SCD is progestin-only contraception. Estrogen-containing contraception can create a risk for blood clots.
  • Women with SCD may hold misconceptions about the efficacy of long-acting reversible contraception that need to be addressed.

Women with sickle cell disease (SCD) experience high rates of unintended pregnancy and low knowledge and use of long-acting reversible contraception (LARC), according to the results of a new study.1

In the study, four in 10 women with SCD reported becoming pregnant when they did not want to be. Eighteen percent experienced this repeatedly, says Lydia H. Pecker, MD, director of the Young Adult Clinic at Johns Hopkins Sickle Cell Center for Adults and assistant professor of medicine in the division of hematology at Johns Hopkins University.

“The reason this matters in the sickle cell population is because women with sickle cell are at increased risks for complications in pregnancy,” she explains. “No pregnancy event is casual for any woman, but the risks associated with sickle cell pregnancy are especially significant.”

For instance, women with SCD are at at higher risk of maternal and fetal mortality, pre-eclampsia, and intrauterine growth restriction, Pecker says. These women also are at risk of preterm birth and sickle cell complications during pregnancy because there is no evidence-based treatment for SCD during pregnancy.

Women with SCD are also at increased risk for blood clots from some contraceptives, including most birth control pills. “The first line of contraception is progestin-only contraception, like intrauterine devices [IUDs] and nonhormonal contraception,” she explains. “The problem is that there is a paucity of data with this, a lack of data on contraceptive safety. In the absence of strong data, women receive all different types of options.”

Forty-six percent of the women participating in the study had used birth control pills, including those that contained estrogen and created a risk of blood clots.1

“Women with sickle cell disease need good, factual information about pregnancy risk, and they need access to high-quality, high-risk obstetrics and sickle cell disease expert care,” Pecker explains. “Providers should know that women with sickle cell are at risk for a thrombosis event and should tailor their counseling about contraceptive choices to that fact.”

Reproductive health providers should consider and counsel patients with SCD about potential complications if they use estrogen-containing birth control, Pecker adds. Often, people with SCD have experienced complications with estrogen options, including strokes, blood clots, or migraines with aura.

One important resource for providers to access is the U.S. Medical Eligibility Criteria for Contraceptive Use.

The summary chart lists these contraceptives as safe for people with SCD:

  • levonorgestrel-releasing IUD;
  • implant;
  • depot medroxyprogesterone acetate;
  • progestin-only pill.

The study revealed that condoms, used by 87% of participants, and birth control pills were the most common contraception among the SCD population. LARC was used by 22% of subjects, and 21% reported a tubal ligation or partner vasectomy.

The lower level of LARC use among this population suggests there are barriers to IUDs and other LARCs, Pecker says.

“LARC is the reason women are controlling their reproduction, and we don’t know what explains this finding [of low IUD use],” she says. “Is it inadequate access to high-quality care? At our center, we don’t think that’s the case.”

One possible explanation is that women with SCD in the study held common misconceptions about the efficacy of LARC. “We did ask several questions about pregnancy risk with contraception, and we found that women with sickle cell disease reported a higher failure rate for IUDs than data show,” Pecker says.

Another possibility is that providers are not addressing pregnancy prevention and possibly infertility risks early when some patients with SCD worry about that issue, she adds. This suggests reproductive health providers should focus on educating patients with SCD about the various contraception options, efficacy, and risks. They also should create opportunities for hand-on-the-door conversations, which are conversations about the patient’s sexual and reproductive health that often happen just as the appointment is ending.

“Make sure these hand-on-the-door conversations about sexual and reproductive health become part of the sit-down conversation and not just when you’re about to leave the patient and walk out of the room,” Pecker says. “I think there’s an opportunity when providers meet women with sickle cell disease to ensure they have proper sickle cell care because it’s really important in guaranteeing [positive] reproductive health outcomes.”

Reproductive health providers should focus on better contraceptive education for SCD patients and communicating the risks and benefits of the various contraceptive interventions, she adds.

Robert A. Hatcher, MD, MPH, chairman of the Contraceptive Technology Update editorial board, says, “Excellent education on all contraceptives, provision of contraceptives at low or no cost, and immediate access to contraceptives on the day you are first seeing a patient can lead to higher use of LARC. In St. Louis, the younger teenagers who chose to use LARC were more likely to choose an implant than an IUD. Providers should keep this in mind while prescribing contraceptives to teenage patients.”

REFERENCE

  1. Pecker LH, Hussain S, Lanzkron, et al. Women with sickle cell disease report low knowledge and use of long-acting reversible contraception. J Natl Med Assoc 2021 Jun 9;S0027-9684(21)00076-6. doi: 10.1016/j.jnma.2021.05.005. [Online ahead of print].