Social Media Surveillance of Multiple Sclerosis Medications Used During Pregnancy and Breastfeeding: Content Analysis

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 This study aimed to analyze the content of posts concerning pregnancy and use of medicines in online forums; thus, the study aimed to gain a thorough understanding of patients’ experiences with MS medication. Methods Using the names of medicinal products as search terms, we collected posts from 21 publicly available pregnancy forums, which were accessed between March 2015 and March 2018. After the identification of relevant posts, we analyzed the content of each post using a content analysis technique and categorized the main topics that users discussed most frequently. Results We identified 6 main topics in 70 social media posts. These topics were as follows: (1) expressing personal experiences with MS medication use during the reproductive period (55/70, 80%), (2) seeking and sharing advice about the use of medicines (52/70, 74%), (3) progression of MS during and after pregnancy (35/70, 50%), (4) discussing concerns about MS medications during the reproductive period (35/70, 50%), (5) querying the possibility of breastfeeding while taking MS medications (30/70, 42%), and (6) commenting on communications with physicians (26/70, 37%). Conclusions Overall, many pregnant women or women considering pregnancy shared profound uncertainties and specific concerns about taking medicines during the reproductive period. There is a significant need to provide advice and guidance to MS patients concerning the use of medicines in pregnancy and postpartum as well as during breastfeeding. Advice must be tailored to the circumstances of each patient and, of course, to the individual medicine. Information must be provided by a trusted source with relevant expertise and made publicly available.

Pregnancy and health in the age of the Internet: A content analysis of online “birth club” forums

“…To our knowledge, this study is the first to provide a large-scale, big data analysis of online pregnancy forums. While several previous studies have manually examined forum posts relating to specific topics-such as vaginal birth after caesarean section [45], multiple sclerosis [46], and vaginal breech birth [47]-the present study examined 262,238 posts from seven different birth club months, yielding a general topical portrait of all posts. By conducting frequency analyses both overall and within four different timeframes, we were able to highlight dominant topics overall as well as those that were trimester-specific.…”

Recommendations for the Use of Social Media in Pharmacovigilance: Lessons from IMI WEB-RADR

“…Admittedly, WEB-RADR’s focus on Twitter and Facebook limits the generalisability of this conclusion and research conducted during the WEB-RADR project and elsewhere using patient fora have identified some data-rich areas. Although the WEB-RADR study of Caster et al [15] did not show any benefit in SD performance using data from patient fora, evidence has been generated concerning methylphenidate and misuse [31, 32], and elsewhere research has shown that social media data can provide real-world use data and outcomes to inform safety decision making [11, 33, 34].…”

“…Products with psychiatric indications were more likely to have a higher volume of posts in general, as well as a higher volume of posts describing potential AEs and mentions in Twitter than in patient fora (methylphenidate – 1.5 × more posts describing AEs in Twitter, zolpidem 7 ×) [16]Further research should be carried out to determine whether there is value in social media data for niche areas of pharmacovigilanceWEB-RADR has demonstrated that there are niche areas of pharmacovigilance where social media data are more plentiful [17, 18] and can complement more traditional sources. For example, there is significant discussion about drug use in pregnancy [34] on social media to suggest that a combination of spontaneous reports and social media is likely to result in improved signal detection. However, the performance of this combined spontaneous/social media approach in specific areas is yet to be demonstrated as value-added relative to spontaneous reporting alone.…”

Artificial Intelligence in Pregnancy: A Scoping Review

“…• Social media posts were used in [172] to analyze concerns related to pregnancy while suffering MS, using ML and NLP techniques. • A real time prediction system using wearable devices and mobile generated data was proposed by authors in [58] to help pregnant women make quick decisions in case of miscarriage or probable miscarriage.…”