为什么#我们不等待-开源自动化胰岛素输送系统使用者的动机和自我报告结果：多国调查。
Why #WeAreNotWaiting-Motivations and Self-Reported Outcomes Among Users of Open-source Automated Insulin Delivery Systems: Multinational Survey.
机构信息
Charité - Universitätsmedizin Berlin, Department of Paediatric Endocrinology and Diabetes, Berlin, Germany.
Berlin Institute of Health, Berlin, Germany.
出版信息
J Med Internet Res. 2021 Jun 7;23(6):e25409. doi: 10.2196/25409.
BACKGROUND
Automated insulin delivery (AID) systems have been shown to be safe and effective in reducing hyperglycemia and hypoglycemia but are not universally available, accessible, or affordable. Therefore, user-driven open-source AID systems are becoming increasingly popular.
OBJECTIVE
This study aims to investigate the motivations for which people with diabetes (types 1, 2, and other) or their caregivers decide to build and use a personalized open-source AID.
METHODS
A cross-sectional web-based survey was conducted to assess personal motivations and associated self-reported clinical outcomes.
RESULTS
Of 897 participants from 35 countries, 80.5% (722) were adults with diabetes and 19.5% (175) were caregivers of children with diabetes. Primary motivations to commence open-source AID included improving glycemic outcomes (476/509 adults, 93.5%, and 95/100 caregivers, 95%), reducing acute (443/508 adults, 87.2%, and 96/100 caregivers, 96%) and long-term (421/505 adults, 83.3%, and 91/100 caregivers, 91%) complication risk, interacting less frequently with diabetes technology (413/509 adults, 81.1%; 86/100 caregivers, 86%), improving their or child's sleep quality (364/508 adults, 71.6%, and 80/100 caregivers, 80%), increasing their or child's life expectancy (381/507 adults, 75.1%, and 84/100 caregivers, 84%), lack of commercially available AID systems (359/507 adults, 70.8%, and 79/99 caregivers, 80%), and unachieved therapy goals with available therapy options (348/509 adults, 68.4%, and 69/100 caregivers, 69%). Improving their own sleep quality was an almost universal motivator for caregivers (94/100, 94%). Significant improvements, independent of age and gender, were observed in self-reported glycated hemoglobin (HbA), 7.14% (SD 1.13%; 54.5 mmol/mol, SD 12.4) to 6.24% (SD 0.64%; 44.7 mmol/mol, SD 7.0; P<.001), and time in range (62.96%, SD 16.18%, to 80.34%, SD 9.41%; P<.001).
CONCLUSIONS
These results highlight the unmet needs of people with diabetes, provide new insights into the evolving phenomenon of open-source AID technology, and indicate improved clinical outcomes. This study may inform health care professionals and policy makers about the opportunities provided by open-source AID systems.
INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.2196/15368.
背景
自动化胰岛素输送（AID）系统已被证明在降低高血糖和低血糖方面是安全有效的，但并非普遍可用、可及或负担得起。因此，用户驱动的开源 AID 系统越来越受欢迎。
目的
本研究旨在调查糖尿病患者（1 型、2 型和其他类型）或其护理人员决定构建和使用个性化开源 AID 的动机。
方法
进行了一项横断面网络调查，以评估个人动机和相关的自我报告临床结果。
结果
在来自 35 个国家的 897 名参与者中，80.5%（722 人）为成年糖尿病患者，19.5%（175 人）为儿童糖尿病患者的护理人员。开始使用开源 AID 的主要动机包括改善血糖结果（476/509 名成年患者，93.5%，95/100 名护理人员，95%），降低急性（443/508 名成年患者，87.2%，96/100 名护理人员，96%）和长期（421/505 名成年患者，83.3%，91/100 名护理人员，91%）并发症风险，减少与糖尿病技术的交互频率（413/509 名成年患者，81.1%；86/100 名护理人员，86%），提高他们或孩子的睡眠质量（364/508 名成年患者，71.6%，80/100 名护理人员，80%），提高他们或孩子的预期寿命（381/507 名成年患者，75.1%，84/100 名护理人员，84%），缺乏商业上可用的 AID 系统（359/507 名成年患者，70.8%，79/99 名护理人员，80%），以及可用治疗方案未达到治疗目标（348/509 名成年患者，68.4%，69/100 名护理人员，69%）。提高自己的睡眠质量是护理人员的一个几乎普遍的动机（100 人中的 94 人，94%）。独立于年龄和性别观察到自我报告的糖化血红蛋白（HbA）显著改善，从 7.14%（SD 1.13%；54.5 mmol/mol，SD 12.4）降至 6.24%（SD 0.64%；44.7 mmol/mol，SD 7.0；P<.001），以及在目标范围内的时间（62.96%，SD 16.18%，至 80.34%，SD 9.41%；P<.001）。
结论
这些结果突出了糖尿病患者的未满足需求，为开源 AID 技术的发展提供了新的见解，并表明临床结果得到了改善。本研究可以为卫生保健专业人员和政策制定者提供有关开源 AID 系统提供的机会的信息。
国际注册报告标识符（IRRID）：RR2-10.2196/15368。
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