Many young patients unaware of pregnancy risks from rheumatic medications
Key takeaways:
- Only 62% of patients on teratogens knew the drugs could harm a pregnancy.
- Most patients wanted to talk to their rheumatologist about reproductive health topics, but many reported no counseling.
Nearly 40% of pregnancy-capable patients with rheumatic disease are unaware of the potential impacts of their medications on pregnancy, including the possibility of birth defects, according to a study published in Pediatric Rheumatology.
The study also suggested low rates of counseling from their rheumatologists on pregnancy prevention and the teratogenicity of their medications, Brittany M. Huynh, MD, MPH, a combined fellow in pediatric rheumatology and adolescent medicine at the Indiana University School of Medicine, and colleagues wrote.
“So many of the young adults felt that they didn’t have a doctor who felt comfortable managing their reproductive health,” Huynh told Healio. “They described not getting any information about this voluntarily from their doctors, and even when they advocated for themselves and asked about birth control, they were met with resistance because no one simultaneously knew enough about birth control and their rheumatic disease to guide them or to prescribe it to them.”
To assess the level of sexual and reproductive health counseling — including knowledge of teratogenicity — among adolescents and young people with rheumatic diseases using teratogens, compared with non-users, Huynh and colleagues surveyed patients aged 14 to 23 years (mean age, 16.7 years) at the Indiana University School of Medicine/Riley Hospital for Children and associated outreach clinics. All participants were assigned female at birth, and included pregnancy-capable trans men and non-binary individuals. The online survey was completed by 108 patients, all of whom received a $15 gift card as compensation.
The survey gathered information about patients’ sexual health practices, their awareness of teratogenicity or the possibility of birth defects and miscarriage, and whether providers had ever asked them about their sexual activity or counseled them on relevant topics. Survey participants also provided access to their electronic health records to confirm their teratogen use and primary rheumatic disease.
Overall, 62% of patients using teratogenic medications, such as methotrexate or mycophenolate, understood their medications could harm a fetus. According to the researchers, 38% of respondents reported their rheumatologist asking at any point if they were sexually active, a figure that increased to 54% among teratogen users.
However, users of teratogenic medications reported low rates of counseling on pregnancy prevention (23%) and emergency contraception (8%). Meanwhile, logistic regression demonstrated that counseling on these topics was unassociated with teratogen use or sexual experience.
“This means either that we are not equipping young people with this knowledge to protect themselves, or that they do not recognize that they are receiving this counseling,” Huynh said.
In addition, 84% of respondents stated they would prefer talking to their rheumatologist about these topics vs. any other health care provider.
“When you look at the literature in other disease categories, subspecialists are largely the ones people with chronic diseases rely on for many aspects of their care,” Huynh said. “Reproductive health is one of them.”
According to Huynh, every patient receiving teratogenic medications should know about the risks, especially adolescents who are typically just beginning to explore their sexuality.
“Most pregnancies in this age group are unplanned, meaning there isn’t time to have discussions about coming off a teratogenic medication first or to ensure that their disease is stable before becoming pregnant, which increases risks to both the fetus and to the pregnant person,” she said. “Young people need to be armed with the information so they can apply it to their lives and changing circumstances.”
For more information:
Brittany M. Huynh, MD, MPH, can be reached at bmbyerle@iu.edu.
Perspective
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This was a great article. The area of sexual and reproductive health (SRH) screening and counseling has been understudied and under used, as highlighted by this analysis. The researchers remind us that adolescents and young adults (AYAs) with rheumatic disease, who are often treated with teratogenic medications such as methotrexate, mycophenolate, and cyclophosphamide, have increasing pregnancy-related risks.
The American College of Rheumatology’s guideline for the management of reproductive health in rheumatic and musculoskeletal diseases acknowledges these risks, and recommends that rheumatologists discuss contraception and pregnancy plans with all reproductive-age women at an initial or early visit, as well as periodically during follow up.
However, overall rates of AYA-reported SRH screening and counseling by pediatric rheumatologists were low. Rates of pregnancy prevention and emergency contraception counseling by rheumatologists were low among teratogen users, though rates were higher when they were asked about counseling by any provider. Rates of counseling on these topics were not significantly different between teratogen users and non-users. Meanwhile, a little less than half of teratogen users received no screening or counseling from their pediatric rheumatologist on any SRH topic.
I agree that a larger study is needed. We also need to educate providers on the need to counsel AYAs on these topics.
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