Analyzing Patient Blog Use and Provider Perceptions to Identify Barriers and Facilitators to Type 1 Diabetes Self-Management: An Exploratory Mixed-Methods Study

 描述(由申请人提供)：很少有健康状况像1型糖尿病(T1D)那样需要患者自我管理。社交媒体使T1D患者能够找到并保持与T1D同龄人的联系，以获得在线自我管理支持。社交媒体增加了患者感受到的连接感，而博客(关于某一内容领域的在线期刊)是由同行制作和管理的来源之一。在检查T1D博客的100条评论的试点数据中，81%与糖尿病障碍有关。博客是研究人员检查T1D自我管理的障碍和促进者的丰富数据来源，并了解如何将它们用作T1D的资源。目标：总体目标是了解博客使用如何促进自我管理支持，并确定T1D的障碍，这些障碍可以在经过验证的调查中进行测试，为未来的临床实践干预提供信息。建议：宾夕法尼亚州立大学医学院的研究人员的目标是：1)确定T1D自我的障碍和促进者 通过对11个最常访问的T1D博客网站进行二次数据分析进行管理；2)开发和验证T1D障碍调查；3)利用新开发的调查进行横断面研究，以确定博客和非博客群体之间的概括性和特征(异同)；以及4)将研究调查工具转化为实用的、临床上有用的护理点工具，以确定T1D患者的自我管理支持需求和资源。意义：发现和创新通常源于科学界，并传播到临床和患者。这一建议是基于患者社区(博客)的数据开发干预措施的范式逆转，以提供给医疗保健专业人员，并传播给科学界。这是一个 对博客帖子和评论进行二次定性分析的新方法。与协调、进行和转录个人和/或焦点小组访谈相比，这些数据将提供基本的时间效率优势。此外，博客的使用允许实时和由患者发起的努力，以寻求自然、渐进和非提示的支持。共同绩效指标和一些顾问拥有T1D，为内容开发和分析提供了一种扎实和概念上有利的方法。我们计划使用现有的调查工具来获得我们的一些数据，特别是与结果相关的数据；然而，我们也将开发和验证一种新的工具，该工具将适用于日常临床使用和护理点决策支持，这是现有工具所不提供的。结论：根据我们的研究结果，我们将提出实用的干预措施，以克服临床环境中自我管理的障碍，包括面向工作流程的、临床上有用的策略，以提供增强的支持和帮助管理T1D自我护理的挑战。

 DESCRIPTION (provided by applicant): Few health conditions require as much patient self-management as type 1 diabetes (T1D). Social media has enabled T1D patients to find and maintain connections with T1D peers for self-management online support. Social media increases the sense of connectedness patients feel, and blogs (online journals about a content area), are one source that is produced and moderated by peers. In pilot data examining 100 comments of T1D blogs, 81% were related to diabetes barriers. Blogs are a rich data source for researchers to examine barriers and facilitators to T1D self-management, and to understand how to use them as a resource for T1D. Goal: The overall objective is to understand how blog use facilitates self-management support and identify barriers to T1D that can be tested in a validated survey to inform future interventions in clinical practice. Proposal: Penn State University College of Medicine researchers aim to 1) Identify barriers and facilitators to T1D self management by conducting a secondary data analysis on 11 most-frequented T1D blog sites; 2) Develop and validate a survey of barriers for T1D; 3) Conduct cross-sectional study with the newly developed survey to determine generalizability and determine characteristics (similarities and differences) between blog and non-blog groups; and 4) Translate the study survey instrument into a practical, clinically useful point of care tool to identify T1D patient support needs and resources in self-management. Significance: Discovery and innovation commonly develop from the scientific community, and disseminated to clinics and patients. This proposal is a paradigm reversal of developing interventions based on data from the patient community (blogs) to bring to healthcare professionals, and disseminated to the scientific community. It is a novel methodology to conduct a secondary qualitative analysis of blog posts and comments. The data will provide a foundational time-efficient advantage over coordinating, conducting, and transcribing individual and/or focus group interviews. Additionally, blog use allows real-time and patient-initiated efforts to seek support that is natural, gradual and non-prompted. The co-PIs and some consultants have T1D, providing a grounded and conceptually advantageous approach to content development and analysis. We plan to use existing survey instruments to obtain some of our data, especially related to outcomes; however, we will also develop and validate a new instrument which will be practical for day-to-day clinical use and point-of-care decision support, which are not offered by the existing instruments. Conclusion: With our findings, we will propose practical interventions to overcome barriers to self-management in clinical settings, including workflow-oriented, clinically useful strategies to provide enhanced support and help manage the challenges of T1D self-care.