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

Keller, Michelle S.; Mosadeghi, Sasan; Cohen, Erica; Kwan, James; Spiegel, Brennan M.

doi:10.2196/jmir.9870

Cited by 25 publications

(24 citation statements)

References 29 publications

(31 reference statements)

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“…However, the set of social networks might be expanded to analyze a richer dataset from a wide variety of sources. Considering other studies in the literature [21,106,107], Facebook and Instagram would be also sources of interest, although public data access is greatly limited.…”

Section: Discussionmentioning

confidence: 99%

“…Regarding IBD, only a few studies exist, and these are focused on the analysis of particular user communities or particular user details. For example, the study by Guo et al studied the use and quality of social media in patients with IBD [20], and the study by Keller et al discussed how individuals taking IBD medication during reproductive periods made decisions about their medication use [21]. So, the aim of this study was to gain a better understanding of the communities involved in the dissemination of information about bowel disease (BD).…”

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

Using Twitter to Understand the Human Bowel Disease Community: Exploratory Analysis of Key Topics

Pérez-Pérez¹,

Pérez-Rodríguez²,

Fdez-Riverola³

et al. 2019

J Med Internet Res

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Background Nowadays, the use of social media is part of daily life, with more and more people, including governments and health organizations, using at least one platform regularly. Social media enables users to interact among large groups of people that share the same interests and suffer the same afflictions. Notably, these channels promote the ability to find and share information about health and medical conditions. Objective This study aimed to characterize the bowel disease (BD) community on Twitter, in particular how patients understand, discuss, feel, and react to the condition. The main questions were as follows: Which are the main communities and most influential users?; Where are the main content providers from?; What are the key biomedical and scientific topics under discussion? How are topics interrelated in patient communications?; How do external events influence user activity?; What kind of external sources of information are being promoted? Methods To answer these questions, a dataset of tweets containing terms related to BD conditions was collected from February to August 2018, accounting for a total of 24,634 tweets from 13,295 different users. Tweet preprocessing entailed the extraction of textual contents, hyperlinks, hashtags, time, location, and user information. Missing and incomplete information about the user profiles was completed using different analysis techniques. Semantic tweet topic analysis was supported by a lexicon-based entity recognizer. Furthermore, sentiment analysis enabled a closer look into the opinions expressed in the tweets, namely, gaining a deeper understanding of patients’ feelings and experiences. Results Health organizations received most of the communication, whereas BD patients and experts in bowel conditions and nutrition were among those tweeting the most. In general, the BD community was mainly discussing symptoms, BD-related diseases, and diet-based treatments. Diarrhea and constipation were the most commonly mentioned symptoms, and cancer, anxiety disorder, depression, and chronic inflammations were frequently part of BD-related tweets. Most patient tweets discussed the bad side of BD conditions and other related conditions, namely, depression, diarrhea, and fibromyalgia. In turn, gluten-free diets and probiotic supplements were often mentioned in patient tweets expressing positive emotions. However, for the most part, tweets containing mentions to foods and diets showed a similar distribution of negative and positive sentiments because the effects of certain food components (eg, fiber, iron, and magnesium) were perceived differently, depending on the state of the disease and other personal conditions of the patients. The benefits of medical cannabis for the treatment of different chronic diseases were also highlighted. Conclusions This study evidences that Twitter is becoming an influential space for conversation about bowel conditions, namely, patient opinions about associated symptoms and treatments. So, further qualitative and quantitative content analyses hold the potential to support decision making among health-related stakeholders, including the planning of awareness campaigns.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Using Twitter to Understand the Human Bowel Disease Community: Exploratory Analysis of Key Topics

Pérez-Pérez¹,

Pérez-Rodríguez²,

Fdez-Riverola³

et al. 2019

J Med Internet Res

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“…First, we collected any medical information that a user shared in a post, such as time since their diagnosis of MS, planned or unplanned pregnancy, gestational age, outcome of pregnancy (or multiple pregnancies), number of pregnancies, current or previous pregnancy, concomitant medications, and John Cunningham (JC) virus serology results. Second, for the questions and concerns written in posts, we applied the content analysis method [16,17]. The aim was to use this categorization to identify common themes (threads) and to assess their frequency.…”

Section: Methodsmentioning

confidence: 99%

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

Rezaallah¹,

Lewis²,

Pierce³

et al. 2019

J Med Internet Res

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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.

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“…A recent American study that incorporated analysis of social media and online forum posts related to patients' experiences of IBD medication use during the reproductive period found themes similar to the current study. 16 In particular, fear of IBD medications in pregnancy were highlighted, including general concerns regarding birth defects and risk of miscarriage. 16 Likewise, this study noted that many patients seemed frustrated by insufficient knowledge from some obstetric care providers.…”

Section: Discussionmentioning

confidence: 99%

“…16 In particular, fear of IBD medications in pregnancy were highlighted, including general concerns regarding birth defects and risk of miscarriage. 16 Likewise, this study noted that many patients seemed frustrated by insufficient knowledge from some obstetric care providers. 16 An interview-based study of eight Japanese women who had IBD and children ranging in age from 7 months to 7 years reported that these women predictably faced adversity at times of IBD flares.…”

Section: Discussionmentioning

confidence: 99%

Addressing pregnancy‐related concerns in women with inflammatory bowel disease: Insights from the patient's perspective

et al. 2020

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Background and Aim: Therapeutic options for inflammatory bowel disease (IBD) have expanded, as has the use of IBD medications in women during the reproductive period. However, no qualitative data exist that examine the pregnancy-related concerns of women with IBD in the current era of widespread immunomodulator and biologic use. Hence, we aimed to explore in detail the impact of IBD on pregnancy from the patient's perspective. Methods: This qualitative study used semistructured interviews to explore participants' experiences regarding IBD and pregnancy until no new themes emerged. Key themes were identified using thematic analysis. Results: Fifteen women with IBD were interviewed. The majority of participants reported lingering concerns regarding their IBD medications, despite advice from their gastroenterologist that the drugs were considered safe in pregnancy. Participants more often reported medication-related fears, such as potential negative effects on their child's immune system, than concerns regarding the effect of the disease itself on their pregnancy outcomes. A common theme was a perceived lack of knowledge among non-IBD clinicians regarding IBD medications during pregnancy, which augmented pre-existing anxiety. Conclusions: This study is the first of its kind to provide an in-depth assessment of female patients' perspectives of IBD in relation to conception, pregnancy, and caring for offspring. In particular, this research characterizes the unique fears and persisting anxieties regarding IBD medications in pregnancy. The study has unearthed important insights into the specific concerns and support needs of women with IBD in order to facilitate nonjudgmental counseling designed around patient concerns and beliefs.

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

Cited by 25 publications

References 29 publications

Using Twitter to Understand the Human Bowel Disease Community: Exploratory Analysis of Key Topics

Using Twitter to Understand the Human Bowel Disease Community: Exploratory Analysis of Key Topics

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

Addressing pregnancy‐related concerns in women with inflammatory bowel disease: Insights from the patient's perspective

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