Dataset Information

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.

SUBMITTER: Rezaallah B

PROVIDER: S-EPMC6702799 | biostudies-literature | 2019 Aug

REPOSITORIES: biostudies-literature

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Publications

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

Rezaallah Bita B Lewis David John DJ Pierce Carrie C Zeilhofer Hans-Florian HF Berg Britt-Isabelle BI

Journal of medical Internet research 20190807 8

<h4>Background</h4>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.<h4>Objective</h4>This study aimed to analyze th ...[more]

PMID: 31392963

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Project description:BackgroundSocial media is often used for health communication and can facilitate fast information exchange. Despite its increasing use, little is known about child health information sharing and engagement over social media.ObjectiveThe primary objectives of this study are to systematically describe the content of social media posts about child pain and sleep and identify the level of research evidence in these posts. The secondary objective is to examine user engagement with information shared over social media.MethodsTwitter, Instagram, and Facebook were searched by members of the research team over a 2-week period using a comprehensive search strategy. Codes were used to categorize the content of posts to identify the frequency of content categories shared over social media platforms. Posts were evaluated by content experts to determine the frequency of posts consistent with existing research evidence. User engagement was analyzed using Netlytic, a social network analysis program, to examine visual networks illustrating the level of user engagement.ResultsFrom the 2-week period, nearly 1500 pain-related and 3800 sleep-related posts were identified and analyzed. Twitter was used most often to share knowledge about child pain (639/1133, 56.40% of posts), and personal experiences for child sleep (2255/3008, 75.00% of posts). For both topics, Instagram posts shared personal experiences (53/68, 78% pain; 413/478, 86.4% sleep), Facebook group posts shared personal experiences (30/49, 61% pain; 230/345, 66.7% sleep) and Facebook pages shared knowledge (68/198, 34.3% pain; 452/1026, 44.05% sleep). Across platforms, research evidence was shared in 21.96% (318/1448) of pain- and 9.16% (445/4857) of sleep-related posts; 5.38% (61/1133) of all pain posts and 2.82% (85/3008) of all sleep posts shared information inconsistent with the evidence, while the rest were absent of evidence. User interactions were indirect, with mostly one-way, rather than reciprocal conversations.ConclusionsSocial media is commonly used to discuss child health, yet the majority of posts do not contain research evidence, and user engagement is primarily one-way. These findings represent an opportunity to expand engagement through open conversations with credible sources. Research and health care communities can benefit from incorporating specific information about evidence within social media posts to improve communication with the public and empower users to distinguish evidence-based content better. Together, these findings have identified potential gaps in social media communication that may be informative targets to guide future strategies for improving the translation of child health evidence over social media.

Project description:IntroductionAs new antiretrovirals (ARVs), including long-acting ARVs for treatment and prevention, are approved and introduced, surveillance during pregnancy must become the safety net for evaluating birth outcomes, especially those that are rare and require large numbers of observations. Historically, drug pharmacovigilance in pregnancy has been limited and fragmented between different data sources, resulting in inadequate data to assess risk. The International Maternal Pediatric Adolescent AIDS Clinical Trials Network and World Health Organization convened a Workshop which reviewed strengths and weaknesses of existing programs and discussed an improved framework to integrate existing safety data sources and promote harmonization and digitalization.DiscussionThis paper highlights that although robust sources of safety data and surveillance programs exist, key challenges remain, including unknown denominators, reporting bias, under-reporting (e.g. in voluntary registries), few data sources from resource-limited settings (most are in North America and Europe), incomplete or inaccurate data (e.g. within routine medical records). However, recent experiences (e.g. with safety signals) and current innovations (e.g. electronic record use in resource-limited settings and defining adverse outcomes) provide momentum and building blocks for a new framework for active surveillance of ARV safety in pregnancy. A public health approach should be taken using data from existing sources, including registries of pregnancy ARV exposure and birth defects; observational surveillance and cohort studies; clinical trials; and real-world databases. Key facilitators are harmonization and standardization of outcomes, sharing of materials and tools, and data linkages between programs. Other key facilitators include the development of guidance to estimate sample size and duration of surveillance, ensuring strategic geographic diversity, bringing partners together to share information and engaging the community of women living with HIV.ConclusionsLooking ahead, critical steps to safely introduce new ARVs include (1) adopting harmonized standards for measuring adverse maternal, birth and infant outcomes; (2) establishing surveillance centres of excellence in areas with high HIV prevalence with harmonized data collection and optimized electronic health records linking maternal/infant data; and (3) creating targets and evaluation goals for reporting progress on implementation and quality of surveillance in pregnancy. The platform will be leveraged to ensure that appropriate contributions and strategic actions by relevant stakeholders are implemented.

Dataset Information

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

Publications

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

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