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

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.

scholarly journals Reproductive Health and Medication Concerns for Patients With Inflammatory Bowel Disease: Thematic and Quantitative Analysis Using Social Listening (Preprint)

2018 ◽  
Author(s):  
Michelle Sophie Keller ◽  
Sasan Mosadeghi ◽  
Erica R Cohen ◽  
James Kwan ◽  
Brennan Mason Ross Spiegel
Keyword(s):  
Inflammatory Bowel Disease ◽  
Social Media ◽  
Reproductive Health ◽  
Bowel Disease ◽  
Medication Use ◽  
Reproductive Age ◽  
Office Visits ◽  
Voluntary Childlessness ◽  
Qualitative Descriptive ◽  
Inflammatory Bowel

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.

Immunological Regulation of Intestinal Fibrosis in Inflammatory Bowel Disease

2021 ◽  
Author(s):  
Giorgos Bamias ◽  
Theresa T Pizarro ◽  
Fabio Cominelli
Keyword(s):  
Inflammatory Bowel Disease ◽  
Bowel Disease ◽  
Large Scale ◽  
Intestinal Inflammation ◽  
Temporal Association ◽  
Stricture Formation ◽  
Intestinal Fibrosis ◽  
Matrix Deposition ◽  
Inflammatory Bowel ◽  
Chronic Intestinal Inflammation

Abstract Intestinal fibrosis is a late-stage phenotype of inflammatory bowel disease (IBD), which underlies most of the long-term complications and surgical interventions in patients, particularly those with Crohn’s disease. Despite these issues, antifibrotic therapies are still scarce, mainly due to the current lack of understanding concerning the pathogenetic mechanisms that mediate fibrogenesis in patients with chronic intestinal inflammation. In the current review, we summarize recent evidence regarding the cellular and molecular factors of innate and adaptive immunity that are considered critical for the initiation and amplification of extracellular matrix deposition and stricture formation. We focus on the role of cytokines by dissecting the pro- vs antifibrotic components of the immune response, while taking into consideration their temporal association to the progressive stages of the natural history of IBD. We critically present evidence from animal models of intestinal fibrosis and analyze inflammation-fibrosis interactions that occur under such experimental scenarios. In addition, we comment on recent findings from large-scale, single-cell profiling of fibrosis-relevant populations in IBD patients. Based on such evidence, we propose future potential targets for antifibrotic therapies to treat patients with IBD.

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

2019 ◽  
Vol 156 (3) ◽  
pp. S11
Author(s):  
Daniel Szvarca ◽  
Nadeem Tabbara ◽  
Jack Masur ◽  
Adam Greenfest ◽  
Lindsay M. Clarke ◽  
...  
Keyword(s):  
Inflammatory Bowel Disease ◽  
Social Media ◽  
Bowel Disease ◽  
Alternative Treatments ◽  
Inflammatory Bowel

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

2019 ◽  
Vol 25 (Supplement_1) ◽  
pp. S8-S8
Author(s):  
Daniel Szvarca ◽  
Nadeem Tabbara ◽  
Jack Masur ◽  
Adam Greenfest ◽  
Lindsay M Clarke ◽  
...  
Keyword(s):  
Inflammatory Bowel Disease ◽  
Social Media ◽  
Bowel Disease ◽  
Alternative Treatments ◽  
Inflammatory Bowel

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

2018 ◽  
Vol 24 (6) ◽  
pp. 1114-1122 ◽  
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

scholarly journals An Autoimmune Protocol Diet Improves Patient-Reported Quality of Life in Inflammatory Bowel Disease

2019 ◽  
Vol 1 (3) ◽  
Author(s):  
Anita Chandrasekaran ◽  
Shauna Groven ◽  
James D Lewis ◽  
Susan S Levy ◽  
Caroline Diamant ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Inflammatory Bowel Disease ◽  
Bowel Disease ◽  
Dietary Intervention ◽  
Maintenance Phase ◽  
Fecal Calprotectin ◽  
Dietary Modification ◽  
Patient Reported ◽  
Inflammatory Bowel

Abstract Background Prior studies suggest dietary modification may improve clinical response or remission rates in patients with inflammatory bowel disease (IBD). Our aim was to examine whether an autoimmune protocol diet improves quality of life in patients with active Crohn disease (CD) and ulcerative colitis (UC). Methods We conducted an uncontrolled clinical trial of the autoimmune protocol diet in adult patients with active IBD (Harvey–Bradshaw Index ≥ 5 for CD or partial Mayo score ≥ 3 for UC, and erosions/ulcers on endoscopy and/or elevated fecal calprotectin). The dietary intervention consisted of a 6-week elimination phase, followed by a 5-week maintenance phase. Short Inflammatory Bowel Disease Questionnaire (SIBDQ) was completed at baseline, and weeks 3, 6, 9, and 11. Results The final cohort included 6 UC and 9 CD participants. Mean SIBDQ score improved significantly from baseline (46.5) to weeks 3 (54.0, P = 0.02), 6 (53.3, P = 0.02), 9 (62.0, P = 0.03), and 11 (60.5, P = 0.05). Among participants completing all 5 surveys, mean SIBDQ increased from 46.5 to 61.5 by week 11 (P = 0.03). By week 3, participants experienced significant improvements in bowel movement frequency (36%, P = 0.04), stress (28%, P = 0.01), and ability to perform leisure/sport activities (29%, P = 0.02). Effects were not significantly different between CD and UC participants. Conclusions Dietary modification can improve quality of life as early as week 3 in patients with active IBD. Larger randomized controlled trials are needed to examine dietary interventions in IBD.

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

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.

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

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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