Adolescents and young adults with sickle cell disease need standardized sexual and reproductive health counseling


The data suggest that both SCD providers and AYA need better evidence and educational resources for contraception, as well as coordinated SRH counseling, according to researchers.

A study published in the Journal of Adolescent Health reports that sickle cell disease (SCD) providers have a wide variety of attitudes, preferences, and practices when addressing adolescents and young adults’ (AYA) sexual and reproductive health (SRH) in female patients.

Maayan Leroy-Melamed, MD, MPH

Maayan Leroy-Melamed, MD, MPH

Maayan Leroy-Melamed, MD, MPH, an adolescent medicine pediatrician at Tufts Children’s Hospital in Boston, and colleagues conducted the study. Researchers surveyed 78 providers in the American Society of Pediatric Hematology/Oncology SCD interest group electronically. Study authors collected data on SCD provider preferences, practices, and attitudes in addressing SRH concerns for female patients with SCD and analyzed results with descriptive statistics.

Of providers surveyed, 95% scored SRH discussions with SCD AYA as moderately important or above. Eighty-nine percent said SRH care should be standardized. Despite overall agreement, researchers reported differences in content, timing, and approach of these conversations with AYA SCD patients. Researchers said that while most SCD providers agreed that SRH discussions with AYA patients should occur in early adolescence post-menarche, “there was a wide variation in terms of frequency of discussion of contraception, pregnancy, and teratogenic medications.” Researchers found a wide variety of comfort levels in prescribing estrogen containing combined hormonal contraceptives (CHC), and said most providers opted for progestin-only methods.

Researchers reported that providers more frequently discussed contraception with AYA SCD patients, and less frequently discussed pregnancy. Providers reported wanting more training, which researchers said may suggest they feel uncomfortable managing pregnancy in SCD patients.

Study authors reported that, at least yearly, most providers discussed contraception (90%), menses (78%), and teratogenic medications (61%), among other SRH topics, with their patients. Providers reported barriers to SRH discussions that included time constraints (74%), presence of parents in the exam room (50%), their own lack of SRH knowledge (50%), parent discomfort (28%), and lack of rapport (17%).

Most providers (83%) referred SCD AYAs for birth control. Thirty-nine percent of providers offered the patients’ preferred method of contraception. Thirty-three percent of these were for levonorgestrel intrauterine devices and 40% were for injectable contraception. “Approximately half of respondents (57%) reported that the use of combined hormonal contraceptives (CHC) was unacceptable despite published guidelines that support potential benefits outweighing theoretical risk in AYAs with SCD,” researchers said. This highlights the need for more evidence-based contraceptive recommendations and more SCD provider education. Researchers said in addition to current CDC recommendations, the 2018 Sickle Cell Guidelines from the United Kingdom indicate that the advantages of CHC are greater than the risks.

To facilitate SRH discussions, providers reported that training curricula or modules would be helpful 63 providers (81%). Fifty-four respondents (69%) said guidelines from the Foundation for SCD Research would help, and 29 providers (37%) said small group discussions at the SCD Association of America conference would be beneficial. Researchers said 72% of respondents (56) thought standardized partnering with SRH specialists would improve care.

Preference among providers for educational resources included online resources (83%), pamphlets or books (76%), a mobile device application (72%), and video education modules (40%).

Researchers concluded that the study showed the need for consensus on how providers address SRH in AYA with SCD. They noted that ongoing studies are required to assess the safety of various contraceptives and effective provider training for SRH. They said patient perspectives on SRH need to be included, and these responses should be compared with provider practices. They also said implementation studies were necessary to examine how SRH information is distributed to have better communication between providers and patients to improve SRH outcomes.

In an interview with Contemporary OB/GYN®, Leroy-Melamed said that for ob-gyn providers who see young women with SCD, “it's important to recognize that patients may or may not have had clear recommendations from their hematologist related to their reproductive health and enter the conversation with an open mind.” She added that there are very few studies on SRH in SCD.

“This study exposes gaps in reproductive health care provision for women with sickle cell disease who have been historically underserved,” she said. “We would love to get more information from the patient side about their sexual and reproductive health care experiences and needs. We'd like to clarify the barriers among providers and patients to help improve reproductive health care provision for this population.”

Melamed told Contemporary OB/GYN® that she always likes to advocate for reproductive justice and listening to patients. “For patients with SCD, we need to consider each individual's reproductive goals and inform them of the known risks and benefits, and what is not yet known, about choices like contraception and pregnancy, and respect their decision,” she said.


  1. Leroy-Melamed M, Jacob S, Shew ML, Kazmerski TM. Provider attitudes, preferences, and practices regarding sexual and reproductive health for adolescents and young adults with sickle cell disease [published online ahead of print, 2021 Jul 19]. J Adolesc Health. 2021;S1054-139X(21)00290-1. doi:10.1016/j.jadohealth.2021.06.008
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