Costs and underuse of insulin and diabetes supplies: Findings from the 2020 T1International cross-sectional web-based survey.

AIMS: To investigate self-reported out-of-pocket expenses (OoPE) associated with insulin and diabetes supplies for people living with type 1 diabetes (T1D) worldwide. METHODS: A web-based, cross-sectional survey was conducted from August to December 2020. The analysis included comparisons between responses from countries with no, partial, and full healthcare coverage. RESULTS: 1,066 participants from 64 countries took part in the study. ~25% of respondents reported having underused insulin at least once within the last year due to perceived cost. A significant correlation was observed between OoPEs and reported household income for respondents with partial healthcare coverage. 63.2% of participants reported disruption of insulin supplies and 25.3% reported an increase of prices related to the COVID-19 pandemic. CONCLUSIONS: This study confirms previous reports of ~25% of people in the United States with T1D using less insulin and/or fewer supplies at least once in the last year due to cost, a trend associated with the extent of healthcare coverage. Similar trends were observed in some middle/low income countries. Moreover, patients reported an increase in insulin prices and disruption of supplies during the COVID-19 pandemic. This study highlights the importance of self-reported OoPEs and its association with underuse/rationing of insulin.

Why #WeAreNotWaiting-Motivations and Self-Reported Outcomes Among Users of Open-source Automated Insulin Delivery Systems: Multinational Survey.

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 (HbA1c), 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.

Shaping Workflows in Digital and Remote Diabetes Care During the COVID-19 Pandemic via Service Design: Prospective, Longitudinal, Open-label Feasibility Trial.

BACKGROUND: The COVID-19 pandemic poses new challenges to health care providers and the delivery of continuous care. Although many diabetes technologies, such as insulin pumps and continuous glucose monitors, have been established, the data from these devices are rarely assessed. Furthermore, telemedicine has not been sufficiently integrated into clinical workflows. OBJECTIVE: We sought to remotely support children with type 1 diabetes and their caregivers, enhance the clinical outcomes and quality of life of children with diabetes, increase multiple stakeholders' engagement with digital care via a participatory approach, evaluate the feasibility of using an interoperable open-source platform in a university hospital setting, and analyze the success factors and barriers of transitioning from conventional care to digital care. METHODS: Service design methods were used to adapt clinical workflows. Remote consultations were performed on a monthly and on-demand basis. Diabetes device data were uploaded from patients' homes to an open-source platform. Clinical and patient-reported outcomes were assessed before, during, and after the COVID-19 lockdown period in Germany. RESULTS: A total of 28 children with type 1 diabetes and their caregivers enrolled in this study and completed 6 months of remote visits. Of these 28 participants, 16 (57%) also opted to attend at least one of their regular visits remotely. After 3 months of remote visits, participants' time in range (P=.001) and time in hyperglycemia (P=.004) significantly improved, and their time in hypoglycemia did not increase. These improvements were maintained during the COVID-19 lockdown period (ie, between months 3 and 6 of this study). Participants' psychosocial health improved after 6 months. CONCLUSIONS: Remote consultations and commonly shared data access can improve the clinical outcomes and quality of life of children with type 1 diabetes, even during challenging circumstances. A service design approach helped with the delivery of comprehensive and holistic solutions that accounted for the needs of multiple stakeholders. Our findings can inform the future integration of digital tools into clinical care during and beyond the pandemic. TRIAL REGISTRATION: German Clinical Trials Register DRKS00016170; https://tinyurl.com/skz4wdk5.

Low uptake of continuous subcutaneous insulin infusion therapy in people with type 1 diabetes in Ireland: a retrospective cross-sectional study.

BACKGROUND: The uptake of continuous subcutaneous insulin infusion (CSII) therapy in those with type 1 diabetes varies internationally and is mainly determined by the national healthcare reimbursement systems. The aim of this study is to estimate national and regional uptake of CSII therapy in children, adolescents and adults with type 1 diabetes in Ireland. METHODS: A retrospective cross-sectional study was conducted utilizing the national pharmacy claims database in 2016. Individuals using CSII were identified by dispensing of infusion sets. The uptake of CSII was calculated as the percentage of people with type 1 diabetes claiming CSII sets in 2016, both in children and adolescent (age < 18 years) and adult populations (≥ 18 years). Descriptive statistics including percentages with 95% confidence intervals (CIs) are presented, stratified by age-groups and geographical regions, and chi-square tests used for comparisons. RESULTS: Of 20,081 people with type 1 diabetes, 2111 (10.5, 95% CI: 10.1-10.9%) were using CSII in 2016. Uptake was five-fold higher in children and adolescents at 34.7% (95% CI: 32.9-36.5%) than in adults at 6.8% (95% CI: 6.4-7.2%). Significant geographical heterogeneity in CSII uptake was found, from 12.6 to 53.7% in children and adolescents (p < 0.001), and 2 to 9.6% in adults (p < 0.001). CONCLUSIONS: Uptake of CSII in people with type 1 diabetes is low in Ireland, particularly in those ≥18 years. Identification of barriers to uptake, particularly in this group, is required.

Prevalence and incidence of type 1 diabetes in Ireland: a retrospective cross-sectional study using a national pharmacy claims data from 2016.

OBJECTIVES: The aim of this study is to estimate the prevalence and incidence of type 1 diabetes in the Irish population using a national pharmacy claims database in the absence of a national diabetes register. DESIGN: National, population-based, retrospective, cross-sectional study. SETTING: Community care with data available through the Health Service Executive Pharmacy Claims Reimbursement Scheme from 2011 to 2016. PARTICIPANTS: Individuals with type 1 diabetes were identified by coprescription of insulin and glucometer test strips without any prolonged course (>12 months) of oral hypoglycaemic agents prior to commencing insulin. Those claiming prescriptions for long-acting insulin only, without any prandial insulin, were excluded from the analysis. Incidence was estimated based on the first claim for insulin in 2016, with no insulin use in the preceding 12 months. MAIN OUTCOME MEASURES: Prevalence of type 1 diabetes in children (<18 years) and adults (≥18 years); incidence of type 1 diabetes in children (≤14 years) and adolescents and adults (>14 years). RESULTS: There were 20 081 prevalent cases of type 1 diabetes in 2016. The crude prevalence was 0.42% (95% CI 0.42% to 0.43%). Most prevalent cases (n=17 053, 85%) were in adults with a prevalence of 0.48% (95% CI 0.47% to 0.48%). There were 1527 new cases of type 1 diabetes in 2016, giving an incidence rate of 32 per 100 000 population/year (95% CI 30.5 to 33.7). There was a significant positive linear trend for age, for prevalence (p<0.0001) and incidence (p=0.014). The prevalence and incidence were 1.2-fold and 1.3-fold higher in men than women, respectively. Significant variations in prevalence (p<0.0001) and incidence (p<0.001) between the different geographical regions were observed. CONCLUSIONS: This study provides epidemiological estimates of type 1 diabetes across age groups in Ireland, with the majority of prevalent cases in adults. Establishing a national diabetes register is essential to enable updated epidemiological estimates of diabetes and for planning of services in Ireland.

Availability of and access to continuous subcutaneous insulin infusion therapy for adults with type 1 diabetes in Ireland.

AIMS: The uptake of continuous subcutaneous insulin infusion (CSII) is low in adults with type 1 diabetes mellitus (T1DM) in Ireland, compared to other countries where CSII is reimbursed. To explore the reasons for the low uptake, this study aims to investigate the availability of CSII in adult diabetes clinics in Ireland. METHODS: A national survey of all adult diabetes clinics (public and private) in Ireland was conducted and completed anonymously by the lead physician/diabetes nurse specialist in each clinic. Descriptive statistics and comparisons between clinics offering different levels of care for CSII are presented. RESULTS: Of 50 diabetes clinics invited, 47 (94%) participated in the study. Fifteen clinics (32%) offered no support for CSII, while 21 (45%) reported offering both training to commence CSII and ongoing support. Based on the survey findings, access to CSII was unavailable for 2426 (11%) of those with T1DM. The majority (n = 15,831, 71% of 22,321 T1DM population) received diabetes care from clinics offering CSII training, but only 2165 were using CSII (10% of T1DM population). Uptake of CSII was higher in clinics offering training than in those offering follow-up care for CSII only (12% vs. 5%, p < 0.001). Clinics offering all CSII services had more specialists (p = 0.005 for endocrinologists and p < 0.001 for dietitians). Reasons for not offering CSII services included staff shortages and heavy workload. CONCLUSIONS: This study highlights the low uptake of CSII in Ireland and demonstrates that, even when reimbursed, other barriers to uptake of CSII can limit its use.