Abstract
Background and Aims
A patient-driven movement has been integral in developing do-it-yourself closed-loop systems (DIYCLS) for management of type 1 diabetes (T1D), in which insulin delivery is adjusted based on continuous glucose monitoring data. There is limited information on the use of DIYCLS and the benefits and challenges experienced by this patient population.
Methods
A cross-sectional survey was completed by users of DIYCLS. Participants were recruited through social media and a diabetes database platform.
Results
For the 180 participants, mean age was 34 years and mean duration of T1D was 20 years. The educational level was college degree or higher for 81.5%. Twenty-six percent of responses were for pediatric users, and 42.9% of respondents lived outside of the United States. The average self-reported hemoglobin A1c was 6.3%. Since initiation of DIYCLS, respondents reported decreases in hypoglycemia (86.5%) and hyperglycemia (87.6%), an increase in sleep quality/quantity (74.7%), and decreases in time spent managing T1D (69.4%) and in T1D-related stress (76.9%). Overall, 69.3% were very satisfied with DIYCLS, and only 1.8% were moderately or very dissatisfied. Participants were particularly satisfied with the systems’ handling of overnight blood glucose (97.6%). There was less satisfaction with ease of initial set-up and troubleshooting, with 19.9% and 19.3% reporting dissatisfaction, respectively.
Conclusions
Users of DIYCLS report overall satisfaction and perceive positive changes in terms of glycemic management and quality of life. The challenges experienced in set-up and troubleshooting are important to consider as further developments in closed-loop insulin delivery are expanded for all people living with T1D.
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