SURVEY: Social Media and My IBD SECTION 1 – General Information (anonymous and optional) Question Title * 1. Country Question Title * 2. Age Question Title * 3. What is your gender? Female Male Other (specify) Question Title * 4. Diagnosis (you can select more than one if overlapping) Crohn’s Disease Ulcerative Colitis Unclassified IBD Question Title * 5. Year of diagnosis Question Title * 6. Country of residence Question Title * 7. Highest level of education completed Primary school Secondary school University / Bachelor’s degree Postgraduate / Master’s degree Other (please specify) Question Title * 8. Current treatment (you can select more than one) Biologics Small molecules (e.g., tofacitinib, upadacitinib, filgotinib) Mesalazine Steroids Azathioprine / Methotrexate Diet only No therapy Other (please specify) Question Title * 9. Have you had surgery for your disease? Yes No SECTION 2 – Social Media Use Question Title * 10. Do you use social media to get information about your IBD? Yes, often Sometimes Rarely Never Question Title * 11. Which platforms do you use most frequently for IBD-related content? (you can select more than one) Facebook Instagram TikTok Reddit YouTube X/Twitter LinkedIn Forums (e.g., HealingWell, PatientsLikeMe) Podcasts Other (please specify) Question Title * 12. Which platforms do you use the most, in order of preference (from most to least)? Question Title * 13. On average, how much time per week do you spend on IBD-related content on social media? <1 hour 1–3 hours 4–7 hours >7 hours Question Title * 14. On average, how much total time do you spend on social media per day (not only for IBD)? <1 hour 1–2 hours 3–4 hours 5–6 hours >6 hours Question Title * 15. Who do you follow the most? Other patients Patient associations Doctors/gastroenterologists Dietitians/nutritionists Influencers/content creators No one in particular Other (please specify) Question Title * 16. Do you create content on social media about IBD? Yes, often Sometimes Rarely Never Question Title * 17. Do you share content about your personal experience to raise awareness among your followers? Yes No SECTION 3 – Impact of Content Question Title * 18. Social media content helps you to: (select all that apply) Better understand the disease Feel less alone Be better prepared for medical visits Try new approaches or therapies Get information about my current therapy Know the latest research advances Learn about ostomy Change eating habits Modify lifestyle (exercise) Share experiences about IBD Exchange disease-related tips Reduce stress or anxiety Other (please specify) Question Title * 19. Have social media helped you better understand your disease? Yes, a lot Partially A little Not at all Question Title * 20. Have you felt more confident and empowered to manage your disease thanks to IBD content you saw on social media? Yes, a lot A little Not much Not at all Question Title * 21. Have you ever discussed something you saw on social media with your doctor? Yes, often Sometimes Rarely Never Question Title * 22. Have you ever changed a therapy decision (even temporarily) based on something read on social media? Yes No Question Title * 23. Have you ever discovered clinical trials, events, or projects you participated in thanks to social media? Yes No Question Title * 24. Have you ever found content that helped you explain your disease to family, friends, or colleagues? Yes No Question Title * 25. Have you ever made friendships or meaningful contacts with other patients met online? Yes No Question Title * 26. How much do you trust the information you find on social media about IBD? A lot Quite a bit A little None at all Question Title * 27. How much do you trust online content in general? A lot Quite a bit A little None at all Question Title * 28. Do you think you can easily identify who is a healthcare professional and who is not on social media? Yes, easily Sometimes Rarely Not at all Question Title * 29. Have you ever found false information about IBD on social media? Yes, often Sometimes Rarely Never Question Title * 30. What worries you most about IBD-related social media content? (select all that apply) False or unverified information Promotion of non-scientific treatments Judgmental or stigmatizing comments Lack of moderation in groups No concerns Other (please specify) Question Title * 31. What discourages you from following IBD content on social media? (select all that apply) Too negative or catastrophic tone Feeling of comparison/inadequacy Too technical content Repetitiveness Other (please specify) Question Title * 32. Have you ever received private messages related to your health condition after sharing content? Yes, positive/supportive Yes, negative/judgmental No Question Title * 33. What topics would you like to see more on social media about IBD? (select all that apply) Diet Therapies Mental health Sexuality News and updates Research Other (please specify) SECTION 4 – Mental Health and Support Question Title * 34. Have social media helped you cope with anxiety, depression, or stress related to IBD? Yes, a lot A little No I don’t use social media this way Question Title * 35. Have social media ever increased your anxiety or worries about the disease? Yes, a lot A little No I don’t use social media this way Question Title * 36. Have you ever unfollowed someone because their IBD content made you feel uncomfortable or worsened your emotional state? Yes No Question Title * 37. Do you feel part of an online community of people with IBD? Yes Partially No Question Title * 38. Would you like more doctors or healthcare professionals to be present on social media to talk about IBD? Yes No Indifferent SECTION 5 – Free Comments Question Title * 39. Is there anything you would like to add about your experience with social media and your disease? Done