炎症性肠病患者对生物疗法风险和益处的理解：来自社交媒体平台大规模分析的见解

Patient Understanding of the Risks and Benefits of Biologic Therapies in Inflammatory Bowel Disease: Insights from a Large-scale Analysis of Social Media Platforms.

作者信息

Martinez Bibiana, Dailey Francis, Almario Christopher V, Keller Michelle S, Desai Mansee, Dupuy Taylor, Mosadeghi Sasan, Whitman Cynthia, Lasch Karen, Ursos Lyann, Spiegel Brennan M R

机构信息

*Cedars-Sinai Center for Outcomes Research and Education (CS-CORE), Los Angeles, California; †Department of Medicine, Cedars-Sinai Medical Center, Los Angeles, California; ‡Department of Medicine, Division of Digestive and Liver Diseases, Cedars-Sinai Medical Center, Los Angeles, California; §Department of Medicine, Division of Health Services Research, Cedars-Sinai Medical Center, Los Angeles, California; and ‖Takeda Pharmaceuticals U.S.A., Inc., Deerfield, Illinois.

出版信息

Inflamm Bowel Dis. 2017 Jul;23(7):1057-1064. doi: 10.1097/MIB.0000000000001110.

DOI:10.1097/MIB.0000000000001110

PMID:28410343

Abstract

BACKGROUND

Few studies have examined inflammatory bowel disease (IBD) patients' knowledge and understanding of biologic therapies outside traditional surveys. Here, we used social media data to examine IBD patients' understanding of the risks and benefits associated with biologic therapies and how this affects decision-making.

METHODS

We collected posts from Twitter and e-forum discussions from >3000 social media sites posted between June 27, 2012 and June 27, 2015. Guided by natural language processing, we identified posts with specific IBD keywords that discussed the risks and/or benefits of biologics. We then manually coded the resulting posts and performed qualitative analysis using ATLAS.ti software. A hierarchical coding structure was developed based on the keyword list and relevant themes were identified through manual coding.

RESULTS

We examined 1598 IBD-related posts, of which 452 (28.3%) centered on the risks and/or benefits of biologics. There were 5 main themes: negative experiences and concerns with biologics (n = 247; 54.6%), decision-making surrounding biologic use (n = 169; 37.4%), positive experiences with biologics (n = 168; 37.2%), information seeking from peers (n = 125; 27.7%), and cost (n = 38; 8.4%). Posts describing negative experiences primarily commented on side effects from biologics, concerns about potential side effects and increased cancer risk, and pregnancy safety concerns. Posts on decision-making focused on nonbiologic treatment options, hesitation to initiate biologics, and concerns about changing or discontinuing regimens.

CONCLUSIONS

Social media reveals a wide range of themes governing patients' experience and choice with IBD biologics. The complexity of navigating their risk-benefit profiles suggests merit in creating online tailored decision tools to support IBD patients' decision-making with biologic therapies.

摘要

背景

很少有研究在传统调查之外考察炎症性肠病（IBD）患者对生物疗法的了解。在此，我们使用社交媒体数据来研究IBD患者对生物疗法相关风险和益处的理解，以及这如何影响决策。

方法

我们收集了2012年6月27日至2015年6月27日期间在3000多个社交媒体网站上发布的来自Twitter的帖子和电子论坛讨论。在自然语言处理的指导下，我们识别出带有特定IBD关键词且讨论了生物制剂风险和/或益处的帖子。然后我们对手头得到的帖子进行人工编码，并使用ATLAS.ti软件进行定性分析。基于关键词列表开发了一个分层编码结构，并通过人工编码确定了相关主题。

结果

我们检查了1598篇与IBD相关的帖子，其中452篇（28.3%）围绕生物制剂的风险和/或益处展开。有5个主要主题：对生物制剂的负面经历和担忧（n = 247；54.6%）、围绕生物制剂使用的决策（n = 169；37.4%）、生物制剂的正面经历（n = 168；37.2%）、向同龄人寻求信息（n = 125；27.7%）以及费用（n = 38；8.4%）。描述负面经历的帖子主要评论了生物制剂的副作用、对潜在副作用和癌症风险增加的担忧以及妊娠安全性问题。关于决策的帖子集中在非生物治疗选择、开始使用生物制剂时的犹豫以及对改变或停止治疗方案的担忧。