Vaughan Sarrazin Mary S, Cram Peter, Mazur Alexandur, Ward Melissa, Reisinger Heather Schacht
Comprehensive Access and Delivery Research and Evaluation (CADRE) Center, Iowa City VA Health Care System, Iowa City, IA, USA,
Patient. 2014;7(1):47-54. doi: 10.1007/s40271-013-0027-y.
In 2010 the US FDA approved dabigatran, the first new anticoagulant for stroke prevention in non-valvular atrial fibrillation (AF) since 1954. To date there is little data that reflects the experiences and perceptions of real-world patients with dabigatran. The abundance of Internet-based discussion forums and support groups related to AF or anticoagulation may provide a low-cost resource for assessing patient experiences.
The aim of this study was to determine patient experiences and perceptions regarding dabigatran through qualitative thematic content analysis of comments posted on publicly accessible virtual discussion forums and Internet support groups.
Comments posted between January 2011 and September 2012 were downloaded from websites focusing on support of patients with AF or on anticoagulation therapy. Comments were analyzed for thematic content.
Five broad thematic categories emerged from the posted comments: general concerns about safety and efficacy, questions about indications and contraindications, questions about proper use and storage, questions about diet and drug restrictions, and experiences with perceived side effects. Our data revealed that a primary concern for patients taking dabigatran is the lack of antidote to reverse the effects of dabigatran if bleeding occurs. Several questions pertaining to the use of dabigatran with other medications or medical conditions were noted, and multiple patients expressed confusion about instructions for using dabigatran before and after medical procedures. An unexpected finding included several criticisms of the medication packaging, which many patients found inconvenient or difficult to open. Finally, several perceived side effects were noted, including some not reported in clinical trials.
Online communities may provide information about topics that are a concern to patients and that may not be discernible in clinical trials, such as medication side effects, proper use, and safety. Our data also highlighted potential topics that may not be a priority to researchers but are nevertheless important to patients (e.g. medication convenience or packaging). Despite the growing use of online health-related communities, very little research makes use of this low-cost resource for identifying patient interests regarding therapeutic treatments to guide patient-oriented research.
2010年，美国食品药品监督管理局（FDA）批准了达比加群，这是自1954年以来用于非瓣膜性心房颤动（AF）预防中风的首个新型抗凝剂。迄今为止，几乎没有数据反映现实世界中使用达比加群患者的经历和看法。大量基于互联网的与AF或抗凝相关的讨论论坛和支持小组可能为评估患者经历提供低成本资源。
本研究的目的是通过对公开的虚拟讨论论坛和互联网支持小组上发布的评论进行定性主题内容分析，确定患者对达比加群的经历和看法。
从专注于支持AF患者或抗凝治疗的网站下载2011年1月至2012年9月期间发布的评论。对评论进行主题内容分析。
发布的评论中出现了五个广泛的主题类别：对安全性和有效性的一般关注、关于适应症和禁忌症的问题、关于正确使用和储存的问题、关于饮食和药物限制的问题以及对感知到的副作用的经历。我们的数据显示，服用达比加群的患者主要关注的是如果发生出血，缺乏逆转达比加群作用的解毒剂。注意到了几个与达比加群与其他药物或医疗状况联合使用有关的问题，并且多名患者对医疗程序前后使用达比加群的说明表示困惑。一个意外发现包括对药物包装的一些批评，许多患者认为其不方便或难以打开。最后，注意到了一些感知到的副作用，包括一些在临床试验中未报告的副作用。
在线社区可能提供有关患者关注的、在临床试验中可能无法察觉的主题的信息，如药物副作用、正确使用和安全性。我们的数据还突出了一些潜在主题，这些主题可能不是研究人员的优先事项，但对患者来说仍然很重要（例如药物便利性或包装）。尽管与健康相关的在线社区的使用越来越多，但很少有研究利用这种低成本资源来确定患者对治疗性治疗的兴趣，以指导以患者为导向的研究。
