Reproductive counseling found lacking for young people with SCD

Study cites critical need for guidelines to close gaps in care

Lindsey Shapiro, PhD avatar

by Lindsey Shapiro, PhD |

Share this article:

Share article via email
A pregnant woman cradles her abdomen with one hand while holding a stuffed toy with the other.

Despite widespread use of therapies that can influence fertility, few young people with sickle cell disease (SCD) have documented discussions with their doctors about their treatments’ potential effects on reproductive health, a new U.S. study found.

While most patients were counseled about the potential to pass SCD on to their future children, counseling about contraception largely skewed to patients who were older and sexually active. Indeed, only slightly more than half of the young people in this study had received contraceptive counseling, and just 4% had documented discussions with clinicians about the possible effects of SCD on fertility.

“There are likely large gaps in reproductive health counseling for youth with SCD,” the researchers wrote, noting the potentially significant “implications for future infertility distress, higher rates of unplanned pregnancies, and pregnancies with health risks.”

“These gaps need to be addressed to mitigate suboptimal reproductive health outcomes and improve well-being in this population, which is already at risk for health disparities and poor mental health,” the team wrote.

The study, “Reproductive Health Counseling among Youth with Sickle Cell Disease,” was published in the Journal of Pediatric and Adolescent Gynecology.

Recommended Reading
An illustration of a red heart broken into two.

Worse pregnancy outcomes found for Black SCD patients in new study

Study urges more reproductive health counseling for young people

With SCD patients living longer and healthier lives with the emergence of new and better therapeutic options, healthcare professionals say it’s becoming more important that all individuals with the disease receive reproductive health counseling. This is especially true, the researchers noted, for young people in the “vulnerable time” of adolescence.

There are a number of considerations surrounding reproduction in SCD. Both the disease itself and some of its treatments have been found to affect fertility.

Moreover, women with SCD, particularly those with severe disease, may be at a higher risk of pregnancy complications.

Despite these known risks, studies have found that young SCD patients may lack knowledge about reproduction and fertility, and rates of unplanned pregnancies among women and girls with SCD are higher than among their healthy peers.

There is a dearth of information, however, about whether young people with SCD are routinely receiving reproductive health counseling, and if so, which aspects are covered in their care.

To learn more, researchers examined data from the healthcare visits of 167 young patients with SCD, ages 14-21, who were seen at either of two pediatric care centers in the U.S. between 2015 and 2019.

Among all of the records, seven patients were found to have had documented discussions about infertility risks associated with SCD itself. Meanwhile, most patients had been offered (97%) or given (62%) an SCD therapy that had been associated with an infertility risk, namely a bone marrow transplant or hydroxyurea.

Discussions about infertility risks associated with these therapies were documented in a minority of cases, accounting for 21% of the patients offered a bone marrow transplant and 9% of those offered hydroxyurea.

More than half (57%) of these young patients had received some type of contraceptive counseling.

Discussions about contraception were significantly associated with being older age, sexually active, the current or past use of birth control, and having severe disease.

Future research should include other measures to capture gaps in counseling … and examine barriers to these discussions in a larger multi-site study

Among female patients, 67% were counseled about the potential negative effects of treatments for kidney failure on a developing fetus and 57% received such counseling for hydroxyurea. A smaller percentage of 13% of female patients had documented discussions about pregnancy-related risks of SCD.

Most young patients (80%) had a documented discussion about the potential of passing SCD on to their children, which was still more likely in older and sexually active patients. Most patients who received this type of counseling were seen at one of the pediatric centers that had a genetic counselor on staff.

Among patients who received genetic counseling, 96% were counseled about risks of SCD in fetal development and 15% about risks of SCD in a newborn.

The findings overall “demonstrate that reproductive health counseling is limited among youth with SCD,” despite the widespread use of treatments that could affect fertility or a developing fetus, according to the researchers.

While doctors may be hesitant to bring up these topics with their patients, such discussions are critical, the researchers said. This is especially true given that “youth with SCD have expressed interest in learning about fertility … and having biological children in the future,” the team wrote.

To address these gaps in knowledge for young SCD patients, the researchers recommended that guidelines be put in place to facilitate reproductive health discussions and potential counseling during clinic appointments.

“Future research should include other measures to capture gaps in counseling … and examine barriers to these discussions in a larger multi-site study,” the team wrote.