Litchman Michelle L, Edelman Linda S, Donaldson Gary W
College of Nursing, University of Utah, Salt Lake City, UT, United States.
Utah Diabetes and Endocrinology Center, Salt Lake City, UT, United States.
JMIR Diabetes. 2018 Apr 24;3(2):e8. doi: 10.2196/diabetes.8603.
Successful diabetes management requires ongoing lifelong self-care and can require that individuals with diabetes become experts in translating care recommendations into real-life day-to-day diabetes self-care strategies. The diabetes online community comprises multiple websites that include social media sites, blogs, and discussion groups for people with diabetes to chat and exchange information. Online communities can provide disease-specific practical advice and emotional support, allow users to share experiences, and encourage self-advocacy and patient empowerment. However, there has been little research about whether diabetes online community use is associated with better diabetes self-care or quality of life.
The aim of this study was to survey adults with diabetes who participated in the diabetes online community to better understand and describe who is using the diabetes online community, how they are using it, and whether the use of the diabetes online community was associated with health indicators.
We recruited adults diagnosed with diabetes who used at least one of 4 different diabetes-related online communities to complete an online survey. Participants' demographics, reported glycated hemoglobin (HbA), health-related quality of life (SF-12v2), level of diabetes self-care (Self-Care Inventory-Revised), and diabetes online community use (level of intensity and engagement) were collected. We examined the relationships between demographics, diabetes online community use, and health indicators (health-related quality of life, self-care, and HbA levels). We used binary logistic regression to determine the extent to which diabetes online community use predicted an HbA <7% or ≥7% after controlling statistically for other variables in the model.
A total of 183 adults participated in this study. Participants were mostly female (71.6%, 131/183), white (95.1%, 174/183), US citizens (82.5%, 151/183), had type 1 diabetes (69.7%, 129/183), with a mean age of 44.7 years (SD 14) and diabetes duration of 18.2 years (SD 14.6). Participants had higher diabetes self-care (P<.001, mean 72.4, SD 12.1) and better health-related quality of life (physical component summary P<.001, mean 64.8, SD 19; mental component summary P<.001, mean 66.6, SD 21.6) when compared with norms for diabetes. Diabetes online community engagement was a strong predictor of A, reducing the odds of having an A ≥7% by 33.8% for every point increase in diabetes online community engagement (0-5). Our data also indicated that study participants are oftentimes (67.2%, 123/183) not informing their healthcare providers about their diabetes online community use even though most (91.2%, 161/181) are seeing their healthcare provider on a regular basis.
Our results suggest that individuals highly engaged with diabetes online community are more likely to have better glycemic levels compared with those with lower engagement. Furthermore, diabetes online community users have high health-related quality of life and diabetes self-care levels. Supplementing usual healthcare activities with diabetes online community use may encourage knowledge and support among a population that needs to optimize its diabetes self-care. Further studies are needed to determine how diabetes online community engagement may affect health outcomes.
成功管理糖尿病需要持续终身的自我护理，这可能要求糖尿病患者成为将护理建议转化为现实生活中日常糖尿病自我护理策略的专家。糖尿病在线社区由多个网站组成，包括社交媒体网站、博客以及供糖尿病患者聊天和交流信息的讨论组。在线社区可以提供针对特定疾病的实用建议和情感支持，让用户分享经验，并鼓励自我倡导和患者赋权。然而，关于使用糖尿病在线社区是否与更好的糖尿病自我护理或生活质量相关，目前研究较少。
本研究旨在对参与糖尿病在线社区的成年糖尿病患者进行调查，以更好地了解和描述哪些人在使用糖尿病在线社区、他们如何使用该社区，以及使用糖尿病在线社区是否与健康指标相关。
我们招募了被诊断患有糖尿病且使用过4个不同糖尿病相关在线社区中至少一个的成年人，让他们完成一项在线调查。收集了参与者的人口统计学信息、报告的糖化血红蛋白（HbA）、健康相关生活质量（SF-12v2）、糖尿病自我护理水平（修订版自我护理量表）以及糖尿病在线社区使用情况（参与强度和参与度）。我们研究了人口统计学、糖尿病在线社区使用情况与健康指标（健康相关生活质量、自我护理和HbA水平）之间的关系。在对模型中的其他变量进行统计学控制后，我们使用二元逻辑回归来确定糖尿病在线社区使用在何种程度上能够预测HbA<7%或≥7%。
共有183名成年人参与了本研究。参与者大多为女性（71.6%，131/183）、白人（95.1%，174/183）、美国公民（82.5%，151/183），患有1型糖尿病（69.7%，129/183），平均年龄44.7岁（标准差14），糖尿病病程18.2年（标准差14.6）。与糖尿病患者的规范标准相比，参与者的糖尿病自我护理水平更高（P<.001，平均72.4，标准差12.1），健康相关生活质量更好（身体成分总结P<.001，平均64.8，标准差19；心理成分总结P<.001，平均66.6，标准差21.6）。糖尿病在线社区参与度是糖化血红蛋白水平的有力预测因素，糖尿病在线社区参与度每增加1分（0 - 5分），糖化血红蛋白≥7%的几率就降低33.8%。我们的数据还表明，尽管大多数参与者（91.2%，161/181）定期看医疗保健提供者，但仍有67.2%（123/183）的参与者未告知他们的医疗保健提供者其使用糖尿病在线社区的情况。
我们的结果表明，与参与度较低的人相比，高度参与糖尿病在线社区的个体更有可能拥有更好的血糖水平。此外，糖尿病在线社区用户具有较高的健康相关生活质量和糖尿病自我护理水平。将糖尿病在线社区的使用作为常规医疗保健活动的补充，可能会在需要优化糖尿病自我护理的人群中促进知识获取和提供支持。需要进一步研究来确定糖尿病在线社区参与度如何影响健康结果。
