Discontinued Use of the Loop Insulin Dosing System: A Mixed-Methods Investigation

Wong, Jessie J.; Suttiratana, Sakinah C.; Lal, Rayhan; Lum, John; Lanning, Monica S.; Dunlap, Adrienne; Arbiter, Brandon; Hanes, Sarah; Bailey, Ryan; Hood, Korey K.; Naranjo, Diana

doi:10.1089/dia.2021.0362

Cited by 12 publications

(10 citation statements)

References 9 publications

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“…The 9 qualitative studies identified relating to DIY AID use, described in Table 3 [ 48 – 56 ], comprised interview studies (n = 5), analysis of Twitter data (n = 2), a workshop summary (n = 1) and analysis of study coordinator meetings (n = 1).…”

Section: Resultsmentioning

confidence: 99%

“…A lack of understanding in how the systems work was reported by 74.4% of participants, 11.6–34.9% felt comfortable answering questions about DIY AID systems [ 37 ] and 97% reported a willingness to learn more about them [ 38 ]. Fear of HCP disapproval of DIY AID was reported as a prominent reason for users who had decided to stop using Loop [ 56 ]. In a survey of 104 school nurses, 23% reported a child using DIY AID attended their school, 46% stated they had no prior knowledge of DIY AID and 96% felt the child should be able to share their data with a parent or guardian during the school day [ 46 ].…”

Section: Resultsmentioning

confidence: 99%

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A scoping review of Do-It-Yourself Automated Insulin Delivery system (DIY AID) use in people with type 1 diabetes

et al. 2022

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Introduction User designed Automated Insulin Delivery systems (AID), termed Do-It-Yourself (DIY) AID include; AndroidAPS, OpenAPS and Loop. These unregulated systems provide challenges for healthcare providers worldwide, with potential legal and ethical barriers to supporting their use. We performed a scoping review of the currently available literature surrounding DIY AID systems, specifically to highlight the evidence available to facilitate healthcare providers to support persons with diabetes who may benefit from DIY AID. Methods Studies relating to DIY AID systems were searched in Embase, Medline, Web of Science, Scopus, Proquest and Cochrane library until 31st December 2021. Publications were screened through title and abstract to identify study type and AID system type described. A thematic synthesis methodology was used for analysis of studies of DIY AID use due to the heterogeneity in study designs (case reports, qualitative, cross-sectional and cohort studies), with similarity in outcome themes. Results Following implementation of the search strategy, 38 relevant full texts were identified; comprising 12 case reports, 9 qualitative studies and 17 cohort studies, and data was also available from 24 relevant conference abstracts. No randomized studies were identified. Common themes were identified in the outcomes across the studies; glycemic variability, safety, quality of life, healthcare provider attitudes and social media. Conclusion There is extensive real-world data, but a lack of randomized control trial evidence supporting DIY AID system use, due to the user-driven, unregulated nature of these systems. Healthcare providers report a lack of understanding surrounding, and confidence in supporting, DIY AID despite impressive observational and user self-reported improvements in glycemic variability, without any reported safety compromises.

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

A scoping review of Do-It-Yourself Automated Insulin Delivery system (DIY AID) use in people with type 1 diabetes

et al. 2022

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“…Qualitative interview data were coded deductively by the research team using NVivo 12 (QSR International) [19], after the data-driven inductive generation of the code structure (Multimedia Appendix 1). This deductive code structure was developed inductively from our data in addition to the consideration and inclusion of common themes identified in previous DIY AID user interview studies [20][21][22]. Overarching themes were constructed from the participants' viewpoints and reflexive thematic analysis was performed by AM [23].…”

Section: Discussionmentioning

confidence: 99%

“…We have only included current Loop users and therefore, have not been able to explore the reasons behind why users may decide to stop using this form of glucose management system. The fear of disapproval of Loop use from a diabetes care provider as well as barriers to acquiring the component devices have been reported as reasons for Loop discontinuation [ 22 ], although we cannot estimate whether these are significant factors in our cohort of individuals who had shared their DIY AID use with their health care providers.…”

Section: Discussionmentioning

confidence: 99%

Improved Glycemia and Quality of Life Among Loop Users: Analysis of Real-world Data From a Single Center

Morrison¹,

Chong²,

Lai³

et al. 2022

JMIR Diabetes

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Background Despite do-it-yourself automated insulin delivery being an unapproved method of insulin delivery, an increasing number of people with type 1 diabetes (T1D) worldwide are choosing to use Loop, a do-it-yourself automated insulin delivery system. Objective In this study, we aimed to assess glycemic outcomes, safety, and the perceived impact on quality of life (QOL) in a local Edmonton cohort of known Loop users. Methods An observational study of adults with T1D who used Loop was performed. An assessment of glycemic and safety outcomes, HbA1c, time in range, hospital admissions, and time below range compared users most recent 6 months of Loop use, with their prior regulatory approved insulin delivery method. QOL outcomes were assessed using Insulin Dosing Systems: Perceptions, Ideas, Reflections, and Expectations, diabetes impact, and device satisfaction measures (with maximum scores of 100, 10, and 10, respectively) and semistructured interviews. Results The 24 adults with T1D who took part in this study 16 (67%) were female, with a median age of 33 (IQR 28-45) years, median duration of diabetes of 22 (IQR 17-32) years, median pre-Loop HbA1c of 7.9% (IQR 7.6%-8.3%), and a median duration of Loop use of 18 (IQR 12-25) months. During Loop use, the participants had median (IQR) values of 7.1% (6.5%-7.5%), 54 mmol (48-58) for HbA1c and 76.5% (64.6%-81.9%) for time in range, which were a significant improvement from prior therapy (P=.001 and P=.005), with a nonsignificant reduction in time below range; 3.0 to 3.9 mmol/L (P=.17) and <3 mmol/L (P=.53). Overall, 2 episodes of diabetic ketoacidosis occurred in a total of 470 months of Loop use, and no severe hypoglycemia occurred. The positive impact of Loop use on QOL was explored in qualitative analysis and additionally demonstrated through a median Insulin Dosing Systems: Perceptions, Ideas, Reflections, and Expectations score of 86 (IQR 79-95), a median diabetes impact score of 2.8 (IQR 2.1-3.9), and a median device satisfaction score of 9 (IQR 8.2-9.4). Conclusions This local cohort of people with T1D demonstrated a beneficial effect of Loop use on both glycemic control and QOL, with no safety concerns being highlighted.

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“…To the best of the authors’ knowledge, this is the first study that is determining the perceived challenges in detail that are seen by caregivers of children and adolescents with diabetes when setting up an open-source AID. Previous studies have specifically examined the experiences of adult users (less so children) with open-source AID ( 14 , 17 , 25 , 37 , 48 , 49 ). The fact that most of the involved researchers have personal experience with open-source AID as active users in addition to their professional roles, as well as the involvement of non-users in the study design underlines the public and patient engagement as a strength of this paper.…”

Section: Discussionmentioning

confidence: 99%

Barriers to Uptake of Open-Source Automated Insulin Delivery Systems: Analysis of Socioeconomic Factors and Perceived Challenges of Caregivers of Children and Adolescents With Type 1 Diabetes From the OPEN Survey

Huhndt

Chen

O’Donnell

et al. 2022

Front. Clin. Diabetes Healthc.

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BackgroundAs a treatment option for people living with diabetes, automated insulin delivery (AID) systems are becoming increasingly popular. The #WeAreNotWaiting community plays a crucial role in the provision and distribution of open-source AID technology. However, while a large percentage of children were early adopters of open-source AID, there are regional differences in adoption, which has prompted an investigation into the barriers perceived by caregivers of children with diabetes to creating open-source systems.MethodsThis is a retrospective, cross-sectional and multinational study conducted with caregivers of children and adolescents with diabetes, distributed across the online #WeAreNotWaiting online peer-support groups. Participants—specifically caregivers of children not using AID—responded to a web-based questionnaire concerning their perceived barriers to building and maintaining an open-source AID system.Results56 caregivers of children with diabetes, who were not using open-source AID at the time of data collection responded to the questionnaire. Respondents indicated that their major perceived barriers to building an open-source AID system were their limited technical skills (50%), a lack of support by medical professionals (39%), and therefore the concern with not being able to maintain an AID system (43%). However, barriers relating to confidence in open-source technologies/unapproved products and fear of digital technology taking control of diabetes were not perceived as significant enough to prevent non-users from initiating the use of an open-source AID system.ConclusionsThe results of this study elucidate some of the perceived barriers to uptake of open-source AID experienced by caregivers of children with diabetes. Reducing these barriers may improve the uptake of open-source AID technology for children and adolescents with diabetes. With the continuous development and wider dissemination of educational resources and guidance—for both aspiring users and their healthcare professionals—the adoption of open-source AID systems could be improved.

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Discontinued Use of the Loop Insulin Dosing System: A Mixed-Methods Investigation

Cited by 12 publications

References 9 publications

A scoping review of Do-It-Yourself Automated Insulin Delivery system (DIY AID) use in people with type 1 diabetes

A scoping review of Do-It-Yourself Automated Insulin Delivery system (DIY AID) use in people with type 1 diabetes

Improved Glycemia and Quality of Life Among Loop Users: Analysis of Real-world Data From a Single Center

Barriers to Uptake of Open-Source Automated Insulin Delivery Systems: Analysis of Socioeconomic Factors and Perceived Challenges of Caregivers of Children and Adolescents With Type 1 Diabetes From the OPEN Survey

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