P013 UNREGULATED: MEDICAL COMPANIES USE SOCIAL MEDIA TO SELL ALTERNATIVE TREATMENTS FOR INFLAMMATORY BOWEL DISEASE

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.

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P613 Social Media Analytics for Inflammatory Bowel Disease – What Are We Missing?

Journal of Crohn s and Colitis ◽

10.1093/ecco-jcc/jjab076.734 ◽

2021 ◽

Vol 15 (Supplement_1) ◽

pp. S557-S557

Author(s):

L Kumar ◽

L Kiely ◽

A O’Riordan ◽

P Barry

Keyword(s):

Inflammatory Bowel Disease ◽

Social Media ◽

Bowel Disease ◽

Dietary Intervention ◽

Temporal Association ◽

Social Media Analytics ◽

Clinical Practices ◽

Information Share ◽

Inflammatory Bowel ◽

Word Search

Abstract Background Increasingly, Inflammatory Bowel Disease (IBD) patients are using social media to disseminate information, share experiences and address queries. Gastroenterologists can play an important role in IBD care by better understanding trends in patients’ perception of their disease. This study aimed to identify trending topics and misconceptions of disease for early targeted education based off patients’ interactions and activity on social media. Methods Utilising an established social media analytics program, we extracted social media posts relating to IBD over a 30-day period between 11/05/2020 and 10/06/2020. The most common hashtags and frequently used words were retrieved from these posts, analysed and qualitatively coded. Additional analysis was performed to evaluate user mentions for specific key words identified from the ECCO consensus for Complementary and Alternative Medicine (CAM) and psychotherapy. Results 22,375 social media posts were reviewed. Twitter was the most common platform with 12,977 posts (58%). Most posts originated from North America and Europe (81%). Amongst common hashtags and words, patients most frequently referenced community groups (n=8094) for example “#crohnswarrior”, followed by terms related to treatment (n=3256), and lifestyle (n=2446). Symptom-related terms were less frequently referenced (n=2031). Of mentions relating to diet and nutrition, ‘gluten free’ was mentioned most frequently (466/2911, 16.0%), followed by ‘vegan’ (374/2911, 12.8%), and ‘plant based’ (342/2911, 11.7%). There was a temporal association with these posts which was demonstrated by hashtags (n=1397) and mentions (n=485) referencing ‘World IBD Day’ which occurred on the 19th of May as well as hashtags (n=391) and mentions (n=1475) referencing the COVID 19 pandemic. Analysis of CAM mentions highlighted patients’ interest in “exercise” as a manipulative and body-based intervention (2015/2088, 96.5%), “cannabinoids” as a herbal and dietary intervention (816/2144, 38.1%) and “yoga” as a mind-body intervention (175/415, 42.2%). 3435 mentions were generated from our psychological key word search. These included terms such as fatigue (28.2%), anxiety (20.1%), depression (13.8%) and suicide (2.2%). Conclusion Our study identified areas where patients’ needs, concerns and queries may be unmet by current clinical practices. Further development of our analytical model can aid gastroenterologists in bridging this gap and providing more holistic patient care.

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Towards understanding how individuals with inflammatory bowel disease use contemporary social media platforms for health-related discourse

Computers in Human Behavior ◽

10.1016/j.chb.2020.106463 ◽

2020 ◽

Vol 112 ◽

pp. 106463

Author(s):

Kate O'Leary ◽

Neil Coulson ◽

Elvira Perez-Vallejos ◽

Derek McAuley

Keyword(s):

Inflammatory Bowel Disease ◽

Social Media ◽

Bowel Disease ◽

Health Related ◽

Social Media Platforms ◽

Inflammatory Bowel

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Use of Social Media for Health-Related Tasks by Adolescents With Inflammatory Bowel Disease: A Step in the Pathway of Transition

Inflammatory Bowel Diseases ◽

10.1093/ibd/izy021 ◽

2018 ◽

Vol 24 (6) ◽

pp. 1114-1122 ◽

Cited By ~ 9

Author(s):

Winnie Szeto ◽

Annelotte van der Bent ◽

Carter R Petty ◽

Jason Reich ◽

Francis Farraye ◽

...

Keyword(s):

Inflammatory Bowel Disease ◽

Social Media ◽

Bowel Disease ◽

Health Related ◽

Inflammatory Bowel ◽

Use Of Social Media

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How Is the Administrator's Experience in Managing Health Facebook Groups?

Research Anthology on Improving Health Literacy Through Patient Communication and Mass Media ◽

10.4018/978-1-6684-2414-8.ch022 ◽

2022 ◽

pp. 397-417

Author(s):

Claudia Pernencar ◽

Inga Saboia

Keyword(s):

Inflammatory Bowel Disease ◽

Social Media ◽

Health Information ◽

User Experience ◽

Bowel Disease ◽

User Interaction ◽

Structured Interviews ◽

Daily Lives ◽

The Status ◽

Inflammatory Bowel

This decade, patients with chronic conditions take advantage of technological resources to share experiences, look for help, and get together in groups. Social media has become a productive spot of health information for users. This chapter clarifies the administrators' user experience of social media health groups within the context of the Inflammatory Bowel Disease (IBD). Semi-structured interviews with 7 Portuguese and Brazilian managers of Facebook groups were carried out. The authors propose a model of participation in online communities that take into account the variables of Presence–Interconnection between users in daily lives; Relationship–Aspects of experience where users meet; Reputation–Positioning of users related to the status; Groups–Relationship issues between members; Conversations – Extension of the user interaction; Sharing–Represents the exchange, distribution, and reception and Education–The information transmitted. Findings reinforced that administrators' groups use social media to lead patients´ empowerment.

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The information and support needs of patients living with inflammatory bowel disease: A qualitative study

Chronic Illness ◽

10.1177/1742395320968617 ◽

2020 ◽

pp. 174239532096861

Author(s):

Paige Karadag ◽

Beth Morris ◽

Kerry Woolfall

Keyword(s):

Inflammatory Bowel Disease ◽

Social Media ◽

Online Communities ◽

Bowel Disease ◽

Support Needs ◽

Qualitative Interview Study ◽

Inflammatory Bowel ◽

Negative Impacts ◽

Ongoing Support ◽

Similar Experience

Objectives To explore patients’ experiences of living with inflammatory bowel disease (IBD) with a focus on their information and support needs. Methods Qualitative interview study involving adults diagnosed with IBD recruited through social media. Interviews were audio recorded, transcribed and data were analysed thematically. Results Interviews with 15 patients (9 females, 6 males) highlighted how misdiagnosis or hesitation to diagnose had caused frustration and anxiety. Once diagnosed, only a few participants received detailed information about IBD from their doctor. Negative experiences shared on social media caused initial anxiety, as individuals assumed that they may have a similar experience, yet online communities enabled insights into the experiences of others, helping patients adjust to living with IBD. Participants described both positive and negative impacts of living with IBD, including improved confidence and periods of anxiety. Discussion: Our findings highlight the importance of clear information and support from health professionals, as well as the benefits of online communities for ongoing support. At the point of diagnosis, patients would benefit from information about what IBD is, as well as how it may impact day to day life from doctors so that social media is not the only source of initial information about IBD.

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