For individuals grappling with type 1 diabetes (T1D), achieving optimal glucose management is not merely a goal but a continuous pursuit critical for both physical and emotional well-being.1 Recent years have witnessed remarkable advancements in diabetes technologies, offering tools like insulin pump therapy (IPT) and continuous glucose monitoring (CGM) to empower individuals to manage their condition more effectively. Despite these breakthroughs, challenges persist, with only a modest 20% of adults with T1D attaining the recommended HbA1c target range. 2,3
The landscape of diabetes technologies includes IPT, CGM, and integrated systems functioning as automated insulin delivery (AID) systems. Clinical evidence from trials and studies underscores the positive impact of these technologies on glucose levels. However, a substantial portion of the T1D population continues to grapple with emotional distress associated with condition management, including diabetes-related distress and fear of hypoglycemia. This discrepancy between technological advancements and real-world outcomes prompts a critical examination of factors influencing accessibility, affordability, and user experiences. 2,3,4
Financial Barriers: A Hurdle to Access 1
In some regions, financial constraints act as a significant impediment to embracing diabetes technologies. In Australia, for instance, despite subsidies for pump consumables, insulin pumps are predominantly accessed by those with private health insurance or the financial means to self-fund. Until July 2022, CGM subsidies in Australia were limited, excluding a significant portion of adults with T1D. These disparities highlight a critical issue: the intersection of health and finances, wherein those with means enjoy better access to transformative technologies.
Device Design Dissatisfaction 1,3
Beyond financial constraints, dissatisfaction with device design emerges as another challenge. Users report significant dissatisfaction leading to device discontinuation. Even individuals with access to these technologies may experience suboptimal outcomes due to design-related concerns, potentially undermining their ability to meet glucose targets. Moreover, technology use, whether successful or not, introduces a substantial burden on users. These insights underscore the need for a holistic understanding of user experiences, considering not only the efficacy of devices but also their impact on users’ daily lives.
Community-Led Research Approach 1
Recognizing the need for a nuanced understanding, a community-led survey was initiated. The aim was to capture the voices of adults with T1D who have experienced or are currently using diabetes technologies. The survey, conducted in Australia, involved 3,380 participants, making it one of the largest population-based studies of its kind. This endeavor was co-designed by individuals with T1D, ensuring that the questions posed were relevant and meaningful to those living with the condition.
Survey Themes and Methodology 2,3
The survey delved into crucial themes identified by the Expert Consumer Consultation Group (ECCG), which included device access, design, emotional and mental health, lived experience, support, and training. The ECCG comprised 13 adults with T1D recruited for their diversity across various factors. An Expert Reference Group (ERG), consisting of healthcare professionals, researchers, and industry experts, provided additional insights and expertise.
To ensure the survey’s relevance and clarity, an iterative process involved feedback from both the ECCG and ERG. The survey covered topics such as current technology use, perceived benefits for physical and emotional well-being, device design, access, information provision, and support needs. Participants also provided sociodemographic and clinical data. The online survey, hosted on Qualtrics, was live for eight weeks, from November 2021 to January 2022, and received responses through direct mails and social media campaigns.
Survey Findings: A Deep Dive 1
The survey uncovered several key findings shedding light on the complex interplay of factors influencing the experiences of individuals with T1D using diabetes technologies.
Table 1: Respondent characteristics. Data are mean (SD) or n (%).
*Missing n = 5. a. Scoring range: 1–7, where 1 = always aware and 7 = never aware. Current or past use of IPT, RT-CGM, or isCGM was reported by 1,845 (54.3%), 2,741(81.1%), and 1,853 (54.8%) respectively.
Perceived Benefits of Device Use 2,3
Overwhelmingly, respondents acknowledged the importance of technology in maintaining glucose levels within the target range. Beyond glycemic control, participants attributed technology use to reducing the severity and frequency of hypoglycemia. Emotional well-being emerged as a crucial aspect, with respondents noting improvements related to happiness, physical activity, socializing, and dietary freedom.
Fig.1. Factors important in using technology for people with T1D experiences in using these devices (IPT, RT-GCM, and isCGM)
Device Design Insights 2
The survey delved into the user experience with different types of devices, including IPT, RT-CGM, and isCGM. Comfort, reliability, ease of use, and effectiveness in maintaining glucose levels within the target range were evaluated. While RT-CGM and isCGM users largely found their devices comfortable, IPT users reported lower satisfaction in this regard. Affordability concerns were consistent across all device classes, with less than 20% of respondents considering their devices affordable.
Fig.2. Responses to questions relating to device design and affordability for (a) IPT; (b) RT-CGM; (c) isCGM by those currently using or with previous experience in the use of these devices.
Information and Training Gaps 1,3
A notable revelation was the dissatisfaction among respondents regarding publicly available information for making informed choices about diabetes technologies. A significant proportion expressed the need for more accessible and comprehensive information. Similarly, while a majority reported receiving sufficient education and training, over 30% felt there was not enough information publicly available for making informed choices about these technologies.
Comparisons: Current vs. Past Device Use 2
Comparisons between current and past users revealed interesting nuances. Emotional well-being was consistently higher among current users of IPT, RT-CGM, and isCGM. Those who continued using their devices were more likely to report better emotional well-being, emphasizing the positive impact of sustained technology use.
Barriers to Access and Unmet Needs 1
The survey results underscore the multifaceted challenges faced by individuals with T1D. Beyond financial barriers and device design dissatisfaction, unmet needs in terms of information provision, training, and support were prominent. The survey’s significance lies not only in identifying these challenges but also in emphasizing the urgency of addressing them to enhance the overall well-being of the diabetes community.
Conclusion: Towards Empowerment 1,2,3
In conclusion, the “Empowering Us” survey provides a comprehensive snapshot of the real-world experiences of adults with T1D using diabetes technologies. It goes beyond clinical efficacy to delve into the intricate web of factors influencing accessibility, affordability, and user satisfaction. The findings advocate for a holistic approach to diabetes care, one that addresses not only the physiological aspects of glucose management but also the emotional and practical dimensions of living with T1D.
Empowering individuals with T1D requires collaborative efforts from healthcare providers, policymakers, and industry stakeholders. This involves tackling financial barriers, refining device designs based on user feedback, and prioritizing accessible, unbiased information for informed decision-making. The journey towards empowerment involves recognizing the diverse needs of the T1D community and fostering a supportive ecosystem that enables individuals to harness the full potential of diabetes technologies.
This survey stands as a testament to the power of community-led research, amplifying the voices of those directly affected by T1D. As technology continues to evolve, so must our commitment to understanding and addressing the multifaceted challenges faced by individuals with diabetes. Only through collective efforts can we truly empower and enhance the lives.
References
- The Diabetes Control and Complications Trial Research Group. The Effect of Intensive Treatment of Diabetes on the Development and Progression of Long-Term Complications in Insulin-Dependent Diabetes Mellitus. New England Journal of Medicine. 1993 Sep 30;329(14):977–86.
- Weissberg-Benchell J, Antisdel-Lomaglio J, Seshadri R. Insulin Pump Therapy: A meta-analysis. Diabetes Care [Internet]. 2003 Apr 1;26(4):1079–87. Available from: https://care.diabetesjournals.org/content/26/4/1079.short
- Maiorino MI, Signoriello S, Maio A, et al. Effects of Continuous Glucose Monitoring on Metrics of Glycemic Control in Diabetes: A Systematic Review With Meta-analysis of Randomized Controlled Trials. Diabetes Care. 2020 Apr 20;43(5):1146–56.
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