Reproductive Health and Medication Concerns for Patients With Inflammatory Bowel Disease: Thematic and Quantitative Analysis Using Social Listening

Background: Inflammatory bowel disease (IBD) affects many individuals of reproductive age. Most IBD medications are safe to use during pregnancy and breastfeeding; however, observational studies find that women with IBD have higher rates of voluntary childlessness due to fears about medication use during pregnancy. Understanding why and how individuals with IBD make decisions about medication adherence during important reproductive periods can help clinicians address patient fears about medication use. Objective: The objective of this study was to gain a more thorough understanding of how individuals taking IBD medications during key reproductive periods make decisions about their medication use. Methods: We collected posts from 3000 social media sites posted over a 3-year period and analyzed the posts using qualitative descriptive content analysis. The first level of analysis, open coding, identified individual concepts present in the social media posts. We subsequently created a codebook from significant or frequently occurring codes in the data. After creating the codebook, we reviewed the data and coded using our focused codes. We organized the focused codes into larger thematic categories. Results: We identified 7 main themes in 1818 social media posts. Individuals used social media to (1) seek advice about medication use related to reproductive health (13.92%, 252/1818); (2) express beliefs about the safety of IBD therapies (7.43%, 135/1818); (3) discuss personal experiences with medication use (16.72%, 304/1818); (4) articulate fears and anxieties about the safety of IBD therapies (11.55%, 210/1818); (5) discuss physician-patient relationships (3.14%, 57/1818); (6) address concerns around conception, infertility, and IBD medications (17.38%, 316/1818); and (7) talk about IBD symptoms during and after pregnancy and breastfeeding periods (11.33%, 206/1818). Conclusions: Beliefs around medication safety play an important role in whether individuals with IBD decide to take medications during pregnancy and breastfeeding. Having a better understanding about why patients stop or refuse to take certain medications during key reproductive periods may allow clinicians to address specific beliefs and attitudes during office visits.