Women’s concerns over taking inflammatory bowel disease (IBD) medications during their reproductive years are not being satisfactorily addressed by physicians, according to a study that analyzed relevant social media posts.
The study, “Reproductive Health and Medication Concerns for Patients With Inflammatory Bowel Disease: Thematic and Quantitative Analysis Using Social Listening,” was published in the Journal of Medical Internet Research.
Treatment of IBD during a woman’s reproductive years is particularly challenging because clinicians want to ensure remission during conception and pregnancy and, at the same time, protect the health of the fetus. Preterm delivery, low birth weight, and a greater risk of miscarriage are all connected with IBD activity at the time of conception.
Although there is growing evidence suggesting that most medications present a low risk of complications during pregnancy and lactation, more women with IBD, particularly those with Crohn’s disease, are choosing not to have children due to concerns over therapies and their effects. Studies have also shown that a significant percentage of surveyed women with IBD said they would stop taking medications during pregnancy even if told otherwise by a physician.
Social listening, which refers to examining social media and forum posts, can be effectively used to determine public attitudes and opinions on various healthcare topics. For example, the research team had previously employed social listening to assess the use of virtual reality in healthcare, and patients’ thoughts about opioid and biologic IBD medications.
According to the authors, the ability to capture discussions without a moderator being present is an advantage, particularly on sensitive topics. Online forums may also be a good source of information from large groups in multiple countries.
However, the researchers note that varying use of social media across groups of different ages, levels of income, and education may introduce bias in social listening.
Younger women with higher levels of income and education may be represented more on online sources than other groups. Not being able to verify the identity or confirm the diagnosis of participants are additional limitations.
Scientists in this study examined social media and health forum posts to better understand how women taking IBD medications during their reproductive years make decisions about their medications. According to the authors, such an understanding “may allow clinicians to address specific beliefs and attitudes during office visits.”
A total of 3,000 social media sites were screened over a three-year period, resulting in 1,818 posts that dealt with IBD medications as they related to reproductive health. Results revealed seven main themes concerning why people used social media to discuss these issues.
They were 1) seeking advice about medication use related to reproductive health; (2) expressing beliefs about the safety of IBD treatments; (3) discussing personal experiences with medications; (4) manifesting fears and anxieties about therapies’ safety; (5) discussing physician-patient relationships; (6) addressing concerns about infertility, conception, and IBD medications; and (7) discussing IBD symptoms during and after pregnancy and breastfeeding.
In line with previous studies, “we found that social media users often expressed significant tension between taking IBD medications for their own health and fears about potential birth defects,” the scientists wrote.
“One important finding of our study is that individuals’ needs may not be adequately addressed in clinical practice and that many patients are frustrated with their providers for failing to discuss the effects of their pharmacological regimens on fertility, pregnancy, and breastfeeding,” they added.
Future research should address why clinicians may hesitate in bringing up reproductive concerns, the investigators believe.
“Improving patient-provider communication around this issue may help improve the health of individuals with IBD during important reproductive periods,” they said.
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