JMIR Publications

ABSTRACT

Background:

Multiple Sclerosis (MS) is a chronic neurological disease occurring mostly in women of childbearing age. Pregnant women with MS are usually excluded from clinical trials; as users of the Internet, however, they are actively engaged in threads and forums on social media. Social media provides the potential to explore real-world patient experiences and concerns about the use of medicinal products during pregnancy and breastfeeding.

Objective:

To analyze the content of posts concerning pregnancy and use of medicines in online forums; thus, to gain thorough understanding of patients’ experiences around MS medication.

Methods:

We collected posts from twenty-one publicly available pregnancy forums accessed between March 2015 and March 2018, using the names of medicinal products as search terms. After the identification of relevant posts, we analyzed the content of each post using a thematic qualitative analysis technique, and categorised the key topics that users discussed most frequently.

Results:

We identified six key topics in seventy social media posts. The key topics were: (1) Expressing personal experiences with MS medication use during the reproductive period (55 out of 70, 80%); (2) Seeking and sharing advice about medication use (52 out 70, 74.28%); (3) Progression of MS during and after pregnancy (35 out of 70, 50%); (4) Discussing concerns about MS medications during the reproductive period (35 out of 70, 50%); (5) Querying the possibility of breastfeeding while taking MS medications (30 out of 70, 42.85%); (6) Commenting on communications with physician(s) (26 out of 70, 37.14%).

Conclusions:

Overall, many pregnant women or women considering pregnancy shared profound uncertainties and specific concerns around taking medications during reproductive periods. There is a significant need to provide advice and guidance to MS patients regarding the use of medicines in pregnancy and postpartum, as well as on breastfeeding. The advice must be tailored to the individual medicine and, of course, to the circumstances of each patient. It should be provided by a trusted source with relevant expertise, and made publicly available.