P2120 - IBS Patients are Reluctant to Post on Social Media and Share More Negative Emotions Compared to Patients With IBD: A Twitter Study

Tewodros T. Ayele, MD¹, Nayiri A. Derian, MD², Archana Ramalingam, MD², Johannes Massell, PhD³, Ean Bills, MD¹, Miranda A.L.. van Tilburg, PhD^1
1Marshall University Joan C. Edwards School of Medicine, Huntington, WV; ²Marshall University, Huntington, WV; ³University of Basel, Basel, Basel-Landschaft, Switzerland

Introduction: It is socially unacceptable to talk about stool which makes people with gut diseases reluctant to share their symptoms. This reluctance may be even higher in patients with irritable bowel syndrome (IBS) whose symptoms are frequently not perceived as real or serious. Social media may provide a safe space for patients to talk about their symptoms, however, this may be avoided by patients who feel stigmatized. This study aims to examine if patients with IBS are less likely to share their symptoms on social media compared to disease advocates and patients with other gut disease (Inflammatory Bowel Disease [IBD]). We also examined if the content of posts differed among groups.

Methods: Posts with ‘irritable bowel syndrome’ and ‘Inflammatory Bowel Disease’ were extracted from Twitter in 11 weeks in 2022 and 5 weeks in 2023 using terms and hashtags ‘Crohn’s disease’, ‘ulcerative colitis’, #crohnsdisease, and #ulcerativecolitis. We determined if a post was from a patient or from an advocate (e.g., healthcare providers, foundation). Non-relevant accounts were excluded (e.g., companies, bots, non-health news sites). Word clouds were generated from word frequencies. Linguistic Inquiry and Word Count (LIWC) software was used to assess the frequency of emotion and non-emotion words of several relevant categories.

Results: Out of 23,114 posts, 8,031 were from non-eligible accounts, leaving a total of 15,083 posts. Posts about IBD (n=9925; 65.8%) were more common than IBS (n=5158; 34.2%). Most posts were from advocates (n=11,232; 74.5%) versus patients (n=3851; 25.5%). For IBS, advocates were about 4 times more active (79.2 vs 20.8%), while in IBD, advocates were about 3 times more active (72% vs 28%) than patients. Table 1 shows that advocates talked more about work, health, illness, and wellness than patients. Posts from IBS patients showed more negative emotions than posts from IBD patients. Word Clouds in Figure 1 indicate patients with IBS or IBD talk about different disease aspects: IBS posts frequently included words related to food and symptoms; IBD posts included words focused on finding help and living with IBD.

Discussion: Despite IBS being more common than IBD, patients and advocates post about 1/2 times less about the disease. Posts related to IBS are also more likely to reflect negative emotions. Advocates are 4 times more likely to post about IBS than patients. These findings reflect a bias to display IBS as negative which may reduce the likelihood that patients receive care and support.



Disclosures:


Tewodros T. Ayele, MD¹, Nayiri A. Derian, MD², Archana Ramalingam, MD², Johannes Massell, PhD³, Ean Bills, MD¹, Miranda A.L.. van Tilburg, PhD¹. P2120 - IBS Patients are Reluctant to Post on Social Media and Share More Negative Emotions Compared to Patients With IBD: A Twitter Study, ACG 2023 Annual Scientific Meeting Abstracts. Vancouver, BC, Canada: American College of Gastroenterology.