Contraception Counseling for SCD Women Found to Vary by Provider

Survey results highlight need for research into clinical guidelines

Steve Bryson, PhD avatar

by Steve Bryson, PhD |

Share this article:

Share article via email
contraception counseling | Sickle Cell Anemia News | survey illustration

Contraception practices and counseling for adolescent and young adult women with sickle cell disease (SCD) vary by the healthcare provider, especially among clinicians with more or less experience, a survey reported.

Established clinicians were found to be more likely to provide contraceptive counseling than those still in training, by a nearly 30% margin.

The results showed that the providers’ beliefs about the potential risks of using the standard SCD therapy hydroxyurea — which can cause fetal harm — while pregnant did not correlate with their contraceptive practices. Notably, more than 40% of the surveyed practitioners agreed there was an increased risk of complications for babies with hydroxyurea treatment during pregnancy.

The investigators said their findings highlight a need for more research into clinical guidelines in contraceptives, contraception counseling, provider training, and patient/parent decision-making. The goal would be to determine whether current practices can be improved.

“Further research is also needed to understand patient/parent and provider communication regarding pregnancy risk for female [adolescents and young adults] with SCD, including a better understanding of patient perspective about their contraceptive choices,” the team wrote.

Recommended Reading
hydroxyurea risks during pregnancy | Sickle Cell Disease News | illustration of pregnant woman

Hydroxyurea Use During Pregnancy Raises Risk of Miscarriage, Stillbirths

The survey findings were detailed in a new study, titled “Pediatric hematology providers’ contraceptive practices for female adolescents and young adults with sickle cell disease: A national survey” and published in the journal Pediatric Blood & Cancer.

In SCD, oxygen-carrying red blood cells become misshapen and rigid, slowing or blocking blood flow in small blood vessels. This can compromise oxygen delivery to tissues and organs, causing damage and inflammation.

Due to advances in newborn screening, preventive disease management, and disease-modifying therapies, almost all people with SCD now live to reproductive age and adulthood.

Research has shown that adolescent and young women with SCD have an increased risk of experiencing health-related problems during pregnancy. Further, animal studies suggest that hydroxyurea, a therapy used to reduce the frequency of vaso-occlusive crises in SCD, can disturb the development of the embryo or fetus, and cause congenital disabilities.

However, data regarding SCD provider contraceptive practices — including contraception counseling — are limited.

To learn more, researchers at the Columbia University Irving Medical Center, in New York, developed a 25-question, web-based survey to assess contraceptive practices. The survey was distributed to providers in the U.S. who had cared for female patients with SCD, ages 12–21, for at least two years.

Among the 160 eligible respondents, 128 identified as female (80%), 30 (18.7%) were nurse practitioners or physician assistants, and 37 (23.1%) were still in training.

Providers’ contraceptive practices

Of the 160 respondents, 156 (97.4%) agreed that clinicians should offer contraceptive counseling and 144 (90.0%) agreed that it was their responsibility to provide such services.

Recommended Reading
sickle cell patient | Sickle Cell Disease News | sickle cell crisis | main graphic for column titled

The Relationship Between My Menstrual Cycle and Sickle Cell Disease

When asked about their own contraceptive practices, 124 respondents (77.5%) said they offered counseling on contraception, while 139 (90.8%) said they referred patients to other providers for contraceptive care. Less than half of providers — 61 or 41.8% — prescribed contraception.

While contraceptive counseling did not differ by the gender or age range of the provider, established practitioners more frequently provided contraceptive counseling than trainees (84.6% vs. 54.1%).

Providers most commonly counseled barrier methods (82.8%), such as condoms, and referred patients for several types of contraception. More than 50% reported referrals for pills, patches, rings, injections, implants, and intrauterine devices. The most common type of prescribed contraception was the contraceptive injection depot medroxyprogesterone acetate (sold as Depo-Provera).

Compared with established providers, a smaller proportion of trainees counseled patients for a patch/ring, and fewer referred for barrier methods, emergency contraception, patch/ring, and Depo-Provera.

Among the respondents, 41.3% agreed there was an increased risk of fetal complications with hydroxyurea treatment, whereas 18.8% disagreed; 40.6% were either neutral or unsure. Researchers noted that beliefs regarding the risk of hydroxyurea were not consistent with the reported contraceptive practices.

Female providers more frequently offered contraception counseling when patients revealed being sexually active as compared with male providers (87.0% vs. 66.7%). Motivations differed between established providers and trainees when a patient asked about or requested contraception, the survey results showed.

Nurse practitioners or physician assistants provided counseling more frequently if practice standards were available than did doctors (45.5% vs. 22.0%). Those with more than 12 years in practice provided significantly more contraceptive counseling when concerned about an increased risk of pregnancy complications than did providers with less practice time (43.1% vs. 23.9%).

Barriers to contraception counseling

Perceived barriers to contraceptive counseling included limited time and willingness of the patients or parents. Similarly, barriers to referrals were mostly patient or parent willingness. For prescribing contraception, insufficient formal training, personal knowledge, and patient or parent willingness were reported as barriers.

Overall, trainees reported insufficient knowledge limiting their ability to counsel more frequently than established providers (60% vs. 35.3%).

Survey respondents also provided comments and suggestions to improve contraceptive practices for adolescents and young women with SCD. Many mentioned the need for “more training” and “guidelines.”

Some providers mentioned the potential use of “multidisciplinary clinics,” “more availability of adolescent medicine/reproductive health providers,” and “easy options for patients to receive long-acting reversible contraception.”

“This study highlights the diverse practice patterns of providers caring for female [adolescents and young adults] with SCD and identified perceived needs for further training and professional guidelines for contraceptive practices,” the researchers wrote.

“More research is needed on the safety of effective contraceptive agents for this population, as well as a clearer assessment of potential teratogenicity [fetal harmful effects] of hydroxyurea and other medications used to treat patients with SCD,” they concluded.