Open source automated insulin delivery systems: experience of russian patients

Open source closed loop automated insulin delivery (CL-AID) systems are increasingly used in the treatment of diabetes. Not being officially approved, such systems are used by patients on their own initiative. Accordingly, the medical community has very little information about the treatment satisfaction and needs of patients that use these systems. We conducted an anonymous internet survey of Russian users of open source CL-AID systems. Ninety-five respondents reported using AndroidAPS (60%), FreeAPS X (16.6%), Loop (10.5%), FreeAPS (5.3%), OpenAPS (3.2%), and Omnia (2.1%). The duration of use of the systems ranged from 0.1 to 6 years (median 2.1 years). The mean HbA1c in users was 6.1% v.s. 7.3% on previous therapy. Most respondents reported an increase in Time in Range (88%), a decrease in the number of hypoglycemic episodes (73%), an improvement in the sleep quality (76%), general well-being (73%), social adaptation (56%) and self-confidence (69%), as well as a decrease in stress levels (56%) after switching to the systems. Ninety (94%) survey participants reported increase in the treatment satisfaction. The majority of respondents (68%) consider themselves advanced gadget users. However, 79% of them had technical difficulties when setting up the system for the first time, 46% had difficulty understanding the settings of the algorithm / program, and 35% spent a lot of effort studying the system. Support from the attending physician was reported by 27% of respondents, 35% noted the neutral attitude to the use of the system, and in 18% of cases the doctor was not aware of its use. All respondents, with the exception of two who found it difficult to answer, plan to continue using the system. Thus, from the patient's point of view, open source CL-AID systems have a positive effect on glycemic control and quality of life. The medical community should pay more attention to the needs of patients using these systems in treatment.