While commercial manufacturers push toward developing closed-loop insulin delivery systems, some type 1 diabetes patients are implementing self-built versions of such systems already. Use of these “do-it-yourself” (DIY) systems is increasing, but without standard regulatory oversight or clinical trial data.
The purpose of this study was to understand: 1) patients’ experiences with DIY systems and 2) their perspectives of how diabetes care providers have supported their use of such systems. We developed a survey through an iterative process and distributed via Twitter and Facebook to patients in the U.S. The survey was open for 2 weeks.
Respondents (n=101) were 2-72 years of age, from 34 states. A majority reported positive clinical outcomes, such as increased time in range (94%), less frequent sleep interruptions (93%), less frequent hyperglycemia (92%), less frequent hypoglycemia (89%), and lower HbA1c (74%).
Most respondents (89%) described DIY systems as “Safe” or “Very Safe,” whereas only 21% chose the same for traditional continuous glucose monitor and insulin pump combinations.
The majority of respondents were the only patient in their endocrinology practice on a DIY system (73%). Most reported their providers were “supportive” of their continued use (80%), but only 20% reported that their endocrinologist “understands the system well.”
Our results suggest that patients are adopting DIY systems with positive reported outcomes, and that endocrinologists are generally supportive despite limited experience with this technology. This study had limitations, including sample size, reliance on self-reported data, lack of a control group, and lack of data from endocrinology providers. Until commercially available closed-loop systems improve, the number of patients using DIY systems is likely to increase. Our research suggests that endocrinology providers may benefit from more exposure to such systems and education regarding their use.
W. Palmer: None. S.W. Greeley: None. L.R. Letourneau: None. R.N. Naylor: None.