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首页> 外文期刊>Interactive Journal of Medical Research >An Innovative Approach to Informing Research: Gathering Perspectives on Diabetes Care Challenges From an Online Patient Community
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An Innovative Approach to Informing Research: Gathering Perspectives on Diabetes Care Challenges From an Online Patient Community

机译：创新的研究方法：从在线患者社区收集有关糖尿病护理挑战的观点

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Background Funding agencies and researchers increasingly recognize the importance of patient stakeholder engagement in research. Despite calls for greater patient engagement, few studies have engaged a broad-based online community of patient stakeholders in the early stages of the research development process. Objective The objective of our study was to inform a research priority-setting agenda by using a Web-based survey to gather perceptions of important and difficult aspects of diabetes care from patient members of a social networking site-based community. Methods Invitations to participate in a Web-based survey were sent by email to members of the PatientsLikeMe online diabetes community. The survey asked both quantitative and qualitative questions addressing individuals’ level of difficulty with diabetes care, provider communication, medication management, diet and exercise, and relationships with others. Qualitative responses were analyzed using content analysis. Results Of 6219 PatientsLikeMe members with diabetes who were sent survey invitations, 1044 (16.79%) opened the invitation and 320 (5.15% of 6219; 30.65% of 1044) completed the survey within 23 days. Of the 320 respondents, 33 (10.3%) reported having Type 1 diabetes; 107 (33.4%), Type 2 diabetes and taking insulin; and 180 (56.3%), Type 2 diabetes and taking oral agents or controlling their diabetes with lifestyle modifications. Compared to 2005-2010 National Health and Nutrition Examination Survey data for individuals with diabetes, our respondents were younger (mean age 55.8 years, SD 9.9 vs 59.4 years, SE 0.5); less likely to be male (111/320, 34.6% vs 48.4%); and less likely to be a racial or ethnic minority (40/312, 12.8% vs 37.5%). Of 29 potential challenges in diabetes care, 19 were categorized as difficult by 20% or more of respondents. Both quantitative and qualitative results indicated that top patient challenges were lifestyle concerns (diet, physical activity, weight, and stress) and interpersonal concerns (trying not to be a burden to others, getting support from family/friends). In our quantitative analysis, similar concerns were expressed across patient subgroups. Conclusions Lifestyle and interpersonal factors were particularly challenging for our online sample of adults with Type 1 or Type 2 diabetes. Our study demonstrates the innovative use of social networking sites and online communities to gather rapid, meaningful, and relevant patient perspectives that can be used to inform the development of research agendas.
机译：背景技术资助机构和研究人员越来越认识到患者利益相关者参与研究的重要性。尽管呼吁更多的患者参与，但很少有研究在研究开发过程的早期阶段就使广泛的患者利益相关者在线社区参与其中。目的我们的研究目的是通过基于Web的调查从基于社交网站的社区的患者成员那里收集对糖尿病护理重要和困难方面的看法，从而为确定研究重点的议程提供参考。方法通过电子邮件将邀请参加基于Web的调查的邀请发送给PatientLikeMe在线糖尿病社区的成员。调查询问了定量和定性问题，以解决个人在糖尿病护理，提供者沟通，药物管理，饮食和运动以及与他人之间的关系方面的困难程度。使用内容分析法对定性反应进行了分析。结果向6219名接受糖尿病患者的LikeMe会员发送了调查邀请，有1044名（16.79％）打开了邀请，而320名（6219的5.15％; 1044的30.65％）在23天内完成了调查。在320位受访者中，有33位（10.3％）报告患有1型糖尿病; 107（33.4％），2型糖尿病并服用胰岛素; 180例（56.3％）2型糖尿病患者，服用口服制剂或通过改变生活方式来控制其糖尿病。与2005-2010年全国糖尿病患者健康与营养检查调查数据相比，我们的受访者年龄较小（平均年龄55.8岁，SD 9.9 vs 59.4岁，SE 0.5）;男性可能性较小（111 / 320，34.6％对48.4％）;并且不太可能是种族或少数民族（40/312，分别为12.8％和37.5％）。在29个糖尿病护理潜在挑战中，有20％或更多的受访者将19个挑战归类为困难。定量和定性结果均表明，患者面临的最大挑战是生活方式问题（饮食，身体活动，体重和压力）和人际关系问题（尽量不给他人造成负担，得到家人/朋友的支持）。在我们的定量分析中，患者亚组之间也表达了类似的担忧。结论对于我们的1型或2型成年人来说，生活方式和人际关系因素尤其具有挑战性。我们的研究表明，社交网站和在线社区的创新用途是收集快速，有意义和相关的患者观点，这些观点可用于指导研究议程的制定。

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