Adeyemi Tosin, Gutermuth Brian, Hodish Gal, Berinstein Jeffrey, Newman Kira, Hawley Sarah, Patel Minal, Higgins Peter, Resnicow Ken, Krein Sarah, Cohen-Mekelburg Shirley
University of Michigan Medical School, Ann Arbor, MI, United States.
Department of Internal Medicine, Michigan Medicine, University of Michigan, Ann Arbor, MI, United States.
J Med Internet Res. 2025 Aug 1;27:e75137. doi: 10.2196/75137.
Given the widespread discussion of inflammatory bowel disease (IBD)-related topics on social media, these platforms play an important role in increasing our understanding of the needs, preferences, and experiences of patients living with IBD.
This study aims to develop an in-depth understanding of Reddit (Reddit, Inc) social media discussions related to individuals' experiences and perspectives living with and managing inflammatory bowel disease.
We identified threads on the r/IBD, r/Ulcerative Colitis, and r/CrohnsDisease subreddits between April 2022 and 2024 using a priori selected keywords to identify IBD-related experiences, perceptions, and needs. We used rapid qualitative analysis using preselected keywords (deductive) followed by further domain development (inductive) to generate a broad understanding of Reddit discussions related to patients living with IBD.
We identified 659 posts comprising 207 (31.4%) original and 452 (68.6%) reply posts related to patients living with IBD. Findings highlighted that people use Reddit to seek knowledge, advice, empathy, and validation as well as to share experiences in five key areas related to: (1) symptoms as a major burden of patients living with IBD; (2) experiences with medications and concerns about treatment choices; (3) health care-related challenges; (4) dietary regimens and dietary guidance for handling symptoms and overall treatment; and (5) negative impact of IBD on mental health.
Use of social media as an avenue for patients with IBD to gain knowledge, empathy, and support suggests that traditional clinical care does not fully address the needs of patients living with IBD as it relates to IBD knowledge, advice, empathy, validation, and sharing of experiences. While social media platforms can provide a platform for patients to share their experiences and build community, study findings also inform future efforts to address identified gaps in care, including the development of interventions to assist patients in managing their symptoms, diet, medications, health care, and mental health concerns.
鉴于社交媒体上对炎症性肠病（IBD）相关话题的广泛讨论，这些平台在增进我们对IBD患者的需求、偏好和经历的理解方面发挥着重要作用。
本研究旨在深入了解Reddit（Reddit公司）上与个人患有和管理炎症性肠病的经历及观点相关的社交媒体讨论。
我们在2022年4月至2024年期间，使用预先选定的关键词，在r/IBD、r/溃疡性结肠炎和r/克罗恩病子版块中识别相关主题帖，以确定与IBD相关的经历、认知和需求。我们先使用预先选定的关键词进行快速定性分析（演绎法），随后进行进一步的领域拓展（归纳法），以全面了解Reddit上与IBD患者相关的讨论。
我们识别出659篇帖子，其中包括207篇（31.4%）原创帖和452篇（68.6%）回复帖，均与IBD患者相关。研究结果突出表明，人们利用Reddit来寻求知识、建议、同理心和认可，以及在五个关键领域分享经历，这些领域包括：（1）症状是IBD患者的主要负担；（2）药物使用经历及对治疗选择的担忧；（3）与医疗保健相关的挑战；（4）处理症状和整体治疗的饮食方案及饮食指导；（5）IBD对心理健康的负面影响。
将社交媒体作为IBD患者获取知识、同理心和支持的途径，这表明传统临床护理未能充分满足IBD患者在IBD知识、建议、同理心、认可和经历分享方面的需求。虽然社交媒体平台可以为患者提供分享经历和建立社区的平台，但研究结果也为未来弥补已发现的护理差距的努力提供了参考，包括开发干预措施以帮助患者管理症状、饮食、药物、医疗保健和心理健康问题。
