S1555 Perspectives, Experiences, and Concerns Among Patients With Short Bowel Syndrome (SBS) and Their Caregivers: Insights From Social Media Platforms

Abstract

Introduction: SBS is a rare, chronic and severe disease resulting from physical loss and functional deficiency of portions of intestine, primarily due to surgical resection. Patients experience a collection of clinical features such as diarrhea, bloating, and weight loss, and frequently need parenteral nutrition (PN), which significantly impacts their health-related quality of life (HRQOL). In this study, we analyzed social media posts to examine the perspectives, experiences, and concerns among patients with SBS and their caregivers. Methods: We extracted 20,221 publicly available posts from SBS-specific sites and other forums (e.g. Careplace, Reddit) between 1/1/10-1/11/21. After applying SBS keyword filters (e.g. short bowel, short gut, SBS) and manual review, we identified 316 relevant posts. We used an open coding technique to qualitatively analyze the posts. Posts were read multiple times and codes were generated inductively, sorted, and grouped into themes and subthemes. Afterwards, we developed an empathy map to visualize the different themes and subthemes. Results: Overall, 70.6% and 14.9% of posts were made by caregivers and patients, respectively; the source for 14.6% of posts was unclear. See Figure for empathy map. Forums were used to seek and share information on how to manage SBS including medication and supplement use, diet, infections, rashes, and feeding tips. Challenges associated with SBS were discussed, such as financial struggles, finding daycare for kids with SBS, coordinating with healthcare providers, managing infections related to PN, gaining weight, absorbing food, and swallowing issues. The need for support was expressed, such as feeling lonely and not understood. There were reports about needing to learn about SBS treatments, how to choose among treatment options, how to handle SBS associated conditions, and how to improve their HRQOL. Common feelings expressed were fear, sadness and anger, and common hopes expressed were stopping PN, maintaining weight, and eating normally. Conclusion: Our analysis supports previous evidence on the marked burden SBS has on physical, social, and mental health for both patients and caregivers. Additionally, this analysis highlights how social media platforms can be used to derive insights on the perspectives, experiences and concerns in a rare disease such as SBS.Figure 1.: Empathy map