Young Rheum Patients Report Gaps in Sexual Health Counseling


Only half of adolescents and young adults on teratogenic drugs reported being asked about sexual activity by their rheumatologist, and 38% did not know that their drug could harm a fetus, according to a new survey.

While pediatric rheumatology providers may think that health screenings and contraceptive counseling are happening elsewhere, “this study suggests that many patients are not, including teratogens,” says Brittany Huynh, MD, MPH, a pediatric rheumatology fellow at the University School of Medicine in Indianapolis. He led the study and presented the findings at the American College of Rheumatology (ACR) 2023 Annual Meeting.

For the study, Huynh and colleagues recruited patients aged 14–23 who were assigned female at birth and followed up at the pediatric rheumatology clinic affiliated with Indiana University. Participants completed a one-time survey between October 2020 and July 2022 and were asked about their experience and knowledge of sexual reproductive health. Remarkably, all but four surveys were completed before the US Supreme Court’s Dobbs decision was overturned. Roe v. Wade.

Of the responses from the 108 participants, the most common diagnoses were juvenile idiopathic arthritis (52%), and systemic lupus erythematosus (16%). About one-third (36%) of patients were on teratogenic drugs, the most common being methotrexate. About three-quarters (76%) were white, and the average age of respondents was 16.7.

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Most participants (82%) said they had been asked about sexual activity by a healthcare provider, but only 38% said their pediatric rheumatologist had discussed this topic with them. Of the 39 patients on teratogenic drugs, 54% said they were asked about sexual activity by their pediatric rheumatologist, and only 51% said they received teratogenicity counseling.

A greater percentage (85%) of this group reported receiving sexual activity screenings by any provider, but there was little difference in counseling about teratogenic drugs.

This suggests that this type of risk counseling is “almost exclusively done by (pediatric rheumatologists), if at all,” Huynh said in his presentation.

Overall, 56% of all patients said that a provider talked to them about how to prevent pregnancy, and 20% said that they were advised on how to obtain and use emergency contraception. Only 6% of patients said their pediatric rheumatologist discussed emergency contraception during appointments.

Although sexual activity assessments were associated with current teratogen use, pregnancy prevention counseling and emergency contraceptive counseling were not associated with teratogen use or reported sexual activity.

The survey also revealed that there are gaps in knowledge about the health effects of rheumatic medicine. Of the patients with teratogens, 38% did not know that their medication could harm a fetus if they became pregnant. Only 9% of patients without teratogens correctly answered that their drug does not harm a fetus.

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Previous studies have also shown that rheumatology patients do not know that their drugs can be teratogenic, said Cuoghi Edens, MD, a rheumatologist at the University of Chicago who sees both adult and pediatric patients. He was not included in the study. The bigger challenge is how to best educate patients, he said.

While it is expected that the patient’s primary care provider discusses these issues with them, these patients often see their rheumatologist more often and more consistently than other providers, Edens said.

“We are sometimes the continuum of care for the patient versus their primary care, although it should be a team effort to try some of these questions,” he said.

Performing reproductive health screening at the pediatric rheumatology clinic can be difficult, says Edens, not only because of time constraints but also because parents often attend their child’s appointments and may have for years. These screenings are most accurate when done one-on-one, so pivoting and removing parents from the room can be awkward for providers, Edens said.

She advises that starting these conversations can be a way to facilitate discussion about reproductive health. In his own practice, Huynh takes time out of appointments to talk with adolescent patients privately.

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“We always talk about the teratogenic drug. I always talk to them about the fact that I will do the pregnancy test with their other screening labs because of the risks involved,” he said. “I also specifically set aside time for patients on teratogens to talk about emergency contraception and offer a prescription, if they are interested.”

Huynh stressed that providing quick access to emergency contraception is essential. The ACR’s reproductive health guidelines, though aimed at adults, recommend discussing emergency contraception with patients, and Huynh advocates writing prescriptions for interested patients.

“They can fill it, and it’s easy to access, so there are no additional barriers, especially for people who are at higher risk,” he said.

While emergency contraceptives are also available over the counter, it can be awkward for young people to ask for them, she said, and they can be expensive if not covered by insurance. Giving a prescription is one way to avoid issues, Huynh said.

“Honestly, you have to have parental buy-in, because if there’s a script, it might be covered by insurance,” he said. “But in my experience, parents are happy to have it as long as you talk to them as well as the young person.”