Reich Jason, Guo Ling, Hall Julia, Tran Ashley, Weinberg Janice, Groshek Jacob, Rowell Tanya E, DiPalma Jack A, Farraye Francis A
*Section of Gastroenterology, Boston Medical Center, Boston, Massachusetts; †Department of Internal Medicine, Boston Medical Center, Boston, Massachusetts; ‡Department of Biostatistics, Boston University School of Public Health, Boston, Massachusetts; §Division of Emerging Media, Boston University School of Communications, Boston, Massachusetts; and ‖Digestive Health Center, University of South Alabama College of Medicine, Mobile, Alabama.
Inflamm Bowel Dis. 2016 Nov;22(11):2678-2687. doi: 10.1097/MIB.0000000000000951.
With the recent increase in the use of social media, patients with chronic illnesses are using the Internet as a resource for disease management. As the peak incidence of inflammatory bowel disease (IBD) occurs in patients between the ages of 15 and 30, IBD is a suitable condition to study social media use. The aim of this study was to assess social media usage and preferences in patients with IBD.
We administered a survey to 118 patients with IBD at our outpatient practice at the Boston Medical Center (BMC), Center for Digestive Disorders, and the University of Southern Alabama (USA) between November 1, 2015, and March 9, 2016.
The most frequently used IBD-specific social media website was the CCFA (86%). High-frequency social media users were more likely to agree that "social media is useful for managing my IBD," compared with low-frequency social media users (OR 3.23, 0.3-10.1, P = 0.199). Fifty-five percent of respondents were interested in obtaining patient-with-IBD education through social media, or organizations such as the CCFA, whereas 45% did not express interest. Sixty-two percent of patients would be interested in following a social media account established by their gastroenterologist. Privacy and/or confidentiality issues were the primary barriers to social media use. Last, most patients were unsure of the quality of IBD information posted online.
The results of this study suggest that patients who frequently use social media are highly interested in using social media in the management of their IBD. Most patients with IBD in our study were interested in receiving IBD information from their gastroenterologist and other patient-related organizations through social media. Most patients are unsure of the quality of IBD information posted on social media. Gastroenterologists should be aware that their patients may use social media to obtain disease education. Future studies should assess the quality of IBD information on social media and the effectiveness of communication through social media as a means to improve patient education and outcomes.
随着社交媒体使用的近期增加，慢性病患者正将互联网作为疾病管理的资源。由于炎症性肠病（IBD）的发病高峰出现在15至30岁的患者中，IBD是研究社交媒体使用的合适疾病。本研究的目的是评估IBD患者的社交媒体使用情况和偏好。
2015年11月1日至2016年3月9日期间，我们在波士顿医学中心（BMC）消化疾病中心和南阿拉巴马大学（USA）的门诊对118例IBD患者进行了一项调查。
最常使用的IBD特定社交媒体网站是CCFA（86%）。与低频社交媒体用户相比，高频社交媒体用户更有可能认同“社交媒体对管理我的IBD有用”（OR 3.23，0.3 - 10.1，P = 0.199）。55%的受访者有兴趣通过社交媒体或CCFA等组织获得IBD患者教育，而45%的人未表达兴趣。62%的患者有兴趣关注其胃肠病医生建立的社交媒体账号。隐私和/或保密问题是使用社交媒体的主要障碍。最后，大多数患者不确定网上发布的IBD信息的质量。
本研究结果表明，频繁使用社交媒体的患者对在IBD管理中使用社交媒体非常感兴趣。我们研究中的大多数IBD患者有兴趣通过社交媒体从其胃肠病医生和其他患者相关组织接收IBD信息。大多数患者不确定社交媒体上发布的IBD信息的质量。胃肠病医生应意识到他们的患者可能会使用社交媒体来获取疾病教育。未来的研究应评估社交媒体上IBD信息的质量以及通过社交媒体进行沟通作为改善患者教育和治疗效果的手段的有效性。
