Help when you need it: Perspectives of adults with T1D on the support and training they would have wanted when starting CGM

Abstract

Aims:

The purpose of this study was to explore preferences that adults with type 1 diabetes (T1D) have for training and support to initiate and sustain optimal use of continuous glucose monitoring (CGM) technology.

Methods:

Twenty-two adults with T1D (M age 30.95±8.32; 59.1% female; 90.9% Non-Hispanic; 86.4% White; diabetes duration 13.5±8.42 years; 72.7% insulin pump users) who had initiated CGM use in the past year participated in focus groups exploring two overarching questions: 1) What helped you learn to use your CGM? and 2) What additional support would you have wanted? Focus groups used a semi-structured interview guide and were recorded, transcribed and analyzed.

Results:

Overarching themes identified were: 1) “I got it going by myself”: CGM training left to the individual; 2) Internet as diabetes educator, troubleshooter, and peer support system; and 3) domains of support they wanted, including content and format of this support.

Conclusion:

This study identifies current gaps in training and potential avenues for enhancing device education and CGM onboarding support for adults with T1D. Providing CGM users with relevant, timely resources and attending to the emotional side of using CGM could alleviate the burden of starting a new device and promote sustained device use.

1. Introduction

Living with type 1 diabetes (T1D) is burdensome and demands around-the-clock vigilance over glucose levels in addition to attention food intake, physical activity, and insulin dosing. Meeting the American Diabetes Association’s glycemic target of maintaining an A1c below 7% (53 mmol/mol) is a major challenge; currently fewer than a quarter of adults with T1D meet this goal [1, 2]. Diabetes technology (i.e., insulin pumps, continuous glucose monitoring or CGM) has the ability to help people living with T1D meet glycemic goals and can also contribute to improvements in quality of life [3, 4]. Additionally, CGM has been shown to increase time spent in target glucose range without increasing risk of short-term complications from hypo- or hyperglycemia [5, 6]. Notably, CGM technology has improved dramatically in the past decade, including greater accuracy, longer wear time, and increased integration with smartphones [7, 8]. These improvements have also paved the way for the development of closed loop systems which contribute to significant improvements in diabetes management such as reductions in hypoglycemia and glucose variability and increases in time spent in target range [9–11]. Taken together, these improvements combined with the automated insulin delivery of closed loop systems contribute to improvements in quality of life and reduced self-management burden for their users [12, 13].

These major developments in CGM technology have helped encourage more people to adopt CGM. However, CGM uptake rates still lag behind insulin pump uptake rates. The majority (63%) of individuals with T1D use insulin pumps while 22% of young adults (18–25 years old) and 37% of adults (26–49 years old) have adopted CGM [1]. Many adults with T1D have endorsed insurance coverage and cost as main barriers to using diabetes devices [14]. Recent studies have shown that insurance coverage of the device promotes consistent CGM use while lack of insurance coverage is a barrier to use [15–17]. Beyond navigating these substantial hurdles to obtaining the device, CGM users must navigate other common barriers and challenges to using the device continuously [18], as near-daily use is what is recommended by the ADA to experience the full benefit of the technology [19].

Beyond the financial barriers, adults with T1D have reported experiencing physical hassles of wearing devices on the body (e.g., skin reactions and issues with adhesive, [20–22] and stress from managing data and accompanying alerts/alarms [14, 23]. For many CGM users, these hassles are not “dealbreakers.” However, for others these hassles lead to discontinuation [14, 24] or less consistent use of CGM than is recommended. In fact, a survey found that more than a quarter of CGM users stop using the device in the first year and nearly a third use the device less than 70% of the time, which means experiencing less of the benefit from the device [25].

The ADA Standards of Care state that “robust education, training, and support are required for optimal CGM device implementation and ongoing use” [19]. A small but growing number of recent European studies have begun to evaluate the impact of enhanced training and support for CGM use [26–29]. The one program designed to support use of real-time CGM systems (versus flash glucose monitoring) saw benefits to CGM knowledge and acceptance, consistent CGM use, and A1c [29]. What formal education and training adults with T1D typically receive when initiating CGM and troubleshooting common issues, and what their preferences would be for CGM education and support, are less well understood. Therefore, the goal of this qualitative study was to explore past experiences with and preferences for CGM training among a sample of adults with T1D who had initiated CGM use in the past year. Specifically, the overarching questions for participants were: 1) What helped you learn to use your CGM? and 2) What additional support would you have wanted?

2. Methods

2.1. Recruitment

Adults with T1D were eligible to participate in focus groups if they were between 18–50 years of age and were within their first year of using CGM consistently. Past CGM use that did not lead to continuous use of CGM was not considered an exclusion, and participants could be eligible if they were willing to start on CGM through their own insurance before initiating study participation. Participants were recruited as part of a pilot study of a CGM support program (manuscript under review) through multiple recruitment sources: clinic screening at an academic medical center’s adult endocrine clinic, an independent database of people interested in participating in T1D-related research, and through social media postings to T1D community groups. Potential participants were screened for eligibility either in person or over the phone. If eligible, participants provided informed consent. Following completion of the focus group and all study procedures, participants received a $100 gift card. Study procedures were approved by the Stanford University Institutional Review Board.

2.2. Focus groups

Focus groups were held over HIPAA-compliant videoconferencing software (Zoom) and were conducted by either MLT (a clinical health psychologist with qualitative methods expertise) or CW (clinical psychology graduate student with training in facilitating focus groups). A semi-structured interview guide was used to ensure consistency across focus groups. Focus groups were audio-recorded, transcribed and deidentified. A total of 8 groups were held. Groups had between 2 and 4 participants each and lasted from 43 to 85 minutes.

2.3. Data analysis

Data from focus group transcripts were initially organized into two broad themes based on the semi-structured interview guide: 1) How did they get started using CGM and what was helpful? and 2) What other support would they have wanted to help them in starting CGM? A team of three coders used matrix analysis in this initial step, as it is an analytic approach that enables visual representation and organization of the data and can complement other qualitative methods [30]. First, two matrices were completed by two independent coders for each transcript; coders added relevant codes and illustrative quotes which were then synthesized through group discussion to resolve discrepancies between coders. The coding team met weekly throughout this process and also contributed to identification of themes and subthemes derived from the data, using thematic analysis [31]. Data organized into broad themes in the matrix were then coded into subthemes using a bottom-up thematic analysis approach. Subthemes were added and revised until no new themes emerged and saturation was reached on themes. Coding was entered into NVivo 12 qualitative data analysis software [32]. To support credibility of the data, the codes and raw data were then reviewed by LHM, a nurse scientist and diabetes educator with expertise in diabetes technology user experience. An audit trail was maintained to document each stage of data analysis and to support dependability of the data [33].

3. Results

Participants were 22 adults with type 1 diabetes (M age 30.95±8.32; 59.1% female; 90.9% Non-Hispanic; 86.4% White, 4.5% Black, 9.1% other). Mean diabetes duration was 13.5±8.42 years. The majority (72.7%) used an insulin pump. Seventeen participants (84.2%) used a Dexcom CGM, 3 used an Abbott FreeStyle Libre (10.5%), and 2 used a Medtronic Guardian sensor (5.3%).

3.1. Themes

In terms of the experience of starting to use CGM, two overarching themes identified were: 1) “I got it going by myself”: CGM training left to the individual; and 2) Internet as diabetes educator, troubleshooter, and peer support system. Participants in the focus groups shared about the need for self-teaching and seeking one’s own resources when getting started with the new device. Participants also described a range of topics and resources they would have liked to have when starting on CGM. Theme 3, which includes 6 subthemes, captures preferences and recommendations for CGM education and ongoing support. Subthemes cover both the content areas they would have appreciated receiving and the format of delivery of CGM-related support. Themes and subthemes are described in greater detail below.

3.1.1. Theme 1: “I got it going by myself”: CGM training left to the individual

Most participants started using their CGM independently rather than receiving formal training through their diabetes provider to use the device. Several participants noted that they were instructed to use manufacturer-provided instructional videos to get started with their CGM. For some, this hands-off process was not difficult:

When I got the Dexcom, it was by myself, and it was super easy. I got it going by myself online.

(34-year-old female).

The only training I received was self-taught, online through Dexcom’s website links and pamphlets they sent. When you get your box of sensors, they show step-by-step. And I was like, ‘Okay, I’ll just follow these [instructions], I guess”

(22-year-old male)

However, some found starting the device independently to be challenging and potentially distressing.

You don’t get really any instruction from your doctor…I think it could be scary to push a button and…I didn’t even realize [the sensor] was, like, in you

(23-year-old female)

3.1.2. Theme 2: “You have to go find it yourself”: The Internet as diabetes educator, troubleshooter, and peer support system.

Participants described turning to the Internet when facing a range of technical issues and/or questions about their device. Participants mentioned turning to Facebook groups, YouTube videos, and Reddit threads as primary sources of information for CGM placement and adhesive tips as well as other information they may not have been told by their healthcare providers.

I did YouTube videos on how to apply it. And then I also read, like, a lot of Reddit. And I found a podcast about it…It is very kind of like, you have to go find it yourself.

(24-year-old female)

Some participants described social media was an essential part of troubleshooting specific issues that arose in using their CGM. For example, participants turned to social media to figure out how to deal with an inserter that would not detach from the sensor, and how to minimize the chance of bleeding on insertion.

I found this really handy video…on YouTube. If anyone ever asks me about it, I always tell them, “When you put in your G6, all you gotta do is kinda angle it, and then push the button, and it doesn’t bleed. But, if you just put it flush to your body—at least on my body, it bleeds all over the place.”

(39-year-old female)

Social media also provided examples of where (and where not) to place a CGM on one’s body. Seeing examples of what others had tried was instructive and influenced what locations someone would be willing to try, including places that are not explicitly recommended by the device manufacturer.

I’m on a couple different groups on Facebook and so I see, all the time, people posting where they wear their Dexcoms. Some people wear ‘em on their forearms. I was like, “Ooh, maybe I’ll try that.” And then I read one of the comments, and this girl was like, “I tried that, but I had my purse on my shoulder, and then my bag fell down my arm and ripped it out, and I thought I was going to die.” And I was like, “Maybe I won’t do that one.”

(27-year-old female)

Social media also provided informational support for the ongoing use of CGM and how to navigate specific circumstances with diabetes devices.

On Facebook groups, I’ve seen people posting like, “What swimsuits do people wear that they can easily clip their pumps to and stuff?” And people will share all kinds of creative ideas.

(30-year-old female)

While most participants described turning to social media as a primary resource for CGM troubleshooting, one participant was in the minority in that they had relationships with other adults with T1D who they could turn to for advice, particularly at the beginning of starting to use the CGM.

I’ve been lucky enough that I know a bunch of people that have the experience and can show me these things. I can imagine that if you just get started [with CGM] on your own, or your doctor recommends it, you sort of get thrown into the deep end, and you have to go and figure it out, right?

(29-year-old male)

3.1.3. Theme 3: Preferences and recommendations for CGM education and ongoing support

Participants shared many ideas of support they wished they had received when they started CGM. As this was a large body of information, the theme was broken into 6 subthemes: 1) support for getting started with insertion, information about adhesives, and common pitfalls to expect early on; 2) guidance for how to advocate for oneself with the manufacturer’s customer support; 3) training on strategies for managing data; 4) attention to the mental/emotional side of using CGM; 5) real-time advice when troubleshooting; and 6) “real talk” from other CGM users on information that the device company and/or their healthcare provider may not share with them. Table 1 presents example quotes for each of these subthemes.

Table 1.

Theme 3: Preferences and recommendations for CGM education and ongoing support - subthemes and example quotes

Subtheme	Example quotes
1) Support when initiating CGM: insertion, adhesives, and education about common pitfalls	How to keep the sensor on. I remember being handed my stack of [manufacturer’s] overlay tape and being told, “These should be fine. These should cover you.” And then it would start to peel after day five, and I would be afraid. It’s like, what to do next? So just being aware of other resources that are available, other kinds of overlay tape…so I can find something that fits my needs and preferences. (30-year-old female) It would be good if Dexcom could consolidate a lot of those [social media posts], whether it’s Instagram, influencers, or videos, or things that are on YouTube. I found a lot of stuff on the Internet…it would be nice to have a better kind of guidebook or resource. (32-year-old male) One thing that I would’ve found helpful was a heads up of the common pitfalls when starting a new CGM. I remember the first time I had a bleeder when I inserted my G6 sensor. And I was terrified that it wasn’t gonna give me accurate readings. So I think just, psychologically, to be prepared for what some of the common challenges may be that I would face, that are still manageable or that can be addressed on my own would’ve been helpful. (34-year-old male)
Guidance for how/when contact manufacturer’s customer support	Being able to say, “This is when you need to call Dexcom and ask for a replacement, this is what you need to do when this happens.” Basically, what’s normal and then what’s not normal. With the insertion, with the numbers, with the accidents that happen—man, there’s just so much stuff. (27- year-old female) Like, “If it [the signal error] doesn’t [go away], here’s the hotline you call. Dexcom customer service is actually great. They’ll overnight you a new one." I was really worried that, I was like, “Oh, my God, these are so expensive. (24-year-old female)
Strategies for managing data	One thing that I wasn’t aware of, and I don’t know if I just missed it in the training session for the CGM, but I used to really get concerned when there was double arrows down or double arrows up…So that always freaked me out when I’d start going low and then just eating. But…it’s actually a certain amount per minute so it’s not as much as I thought. (39-year-old female) I think for me it’s tips and tricks and things like that. And understanding that there’s a lag time. (25-year-old male)
Attention to the mental/emotional side of using CGM	I do think that there’s a lot of conversation that needs to be had about how to stay healthy with the data and not become so myopic…Like, using it skillfully and wisely without becoming…you know, it could be a whole anxiety disorder category in and of itself. (50-year-old female) So almost a handbook of, this is how you deal with it…also, how you can deal with the mental health part of it because I think that data can be super overwhelming. (24-year-old female)
Real-time advice when troubleshooting	To be able to bounce off someone when you’re having issues, especially someone who’s going through the same situation is really useful. If I’m having a tough time, and I can just text someone else and be like, “Hey, like, my Dexcom’s not working, da-da-da-da-da.” That’s a lot more approachable— …than having to contact Dexcom’s customer support. (25year-old male) You can ask your doctor always, right? But [the] doctor’s busy, too, and they cannot just – oh, it’s Sunday night. They cannot just immediately respond to non-urgent questions. So, having someone to talk to would be helpful. (29-year-old male)
Access to ‘real talk’: advice, support, and from other CGM users with T1D that goes beyond the official manufacturer materials	No one really sits down with you in the doctor’s office and talks to you about how to loop the tubing through your pants …or if you’re a hyper athlete and you like to swim, what to do about that. (48-year-old male) One thing that I think I would’ve found helpful to have earlier was access to different resources and perspectives on how to use the CGM…I was given the official Dexcom pamphlet and materials and videos, and I watched them, and I was like, “Oh, are my only options to put, um, the sensor in my abdomen?” ’Cause I already where my infusion sets there often. (30-year-old female)

Participants mentioned that practical tips could have been particularly useful, such as being given additional information about products to help the sensor stay adhered to skin and being given detailed instructions for insertion and what to expect (subtheme #1). They also shared about wanting to be given a “heads up of the common pitfalls” when starting on CGM, such as what to do if there is bleeding upon insertion. One participant described they would have wanted tips for “troubleshooting for the future” to be able to prevent or minimize the emotional distress that can occur in the moment of experiencing a particular CGM issue for the first time. Several participants described feeling “afraid” or “terrified” when experiencing a “common pitfall” of the CGM for the first time and wanted to prevent this experience for others. Some participants mentioned that they would have wanted to be told what situations warrant calling the manufacturer’s customer service and when to advocate for replacement supplies (subtheme #2).

Participants expressed the desire to have more training and support on understanding how to interpret CGM data and trend arrows and on understanding the timing of data (e.g., “understanding that there’s a lag time”) (subtheme #3). Participants specifically mentioned wanting to be introduced to the different options for viewing data (e.g., Clarity, Tidepool), and for customizing alerts. Participants also wanted to be told in advance what to expect when temporary signal loss occurs.

In addition to practical tips, several participants noted that they would have benefitted from support for the “mental health part” of CGM data (subtheme #4). One participant noted that their physician “warned me before he gave it to me”:

He said, “I have fired patients from the Dexcom before, so don’t fall into this overload, micromanagement thing because I will take it away.”

(26-year-old female)

Aside from this warning, however, participants were not explicitly trained on how to engage with and respond to the large volume of data from CGM in a sustainable way. Within this subtheme, participants expressed wanting to have a better understanding of what the numbers and colors mean specifically to be able to manage their emotional reactions to the numbers. For example, one participant (29-year-old male) described needing to learn to not “be scared of the big red number”. Participants also described wanting to be told they can take breaks from looking at their CGM if needed and ways of thinking about the technology to reduce the chance of becoming overwhelmed by the data.

Just letting people know that, although technology can be annoying…the tools can be helpful…And you just take them as tools and not to create more problems for yourself where you feel worse about things. You know, they’re just to help.

(39-year-old female)

To support ongoing use of CGM, participants shared that they would benefit from a resource to access real-time advice and support for troubleshooting particular issues (subtheme #5). They expressed a preference for being able to talk with someone “who’s going through the same situation” (25-year-old male) as opposed to contacting one’s doctor, who may not be available to provide a real-time answer, or the manufacturer’s customer service for support.

It’s one thing to go to a website and get information from a Google search. It’s another thing to talk face-to-face with somebody and say… “Here are the issues I’m facing,” and then to have somebody say, “Oh, I’ve had exactly that same issue.” …Being able to get that information more or less in real time so that you can put it into practice, I think, is really nice.

(30-year-old female)

This subtheme went hand-in-hand with participants expressing a desire to connect with others with T1D who use CGM (subtheme #6). They described wanting advice and guidance from other CGM users, which is something they often lacked in their daily lives with T1D (outside of social media). Participants expressed wanting access to others, possibly in a group format, to be able to ask questions. Another value they saw in connecting with others with T1D was to have access to “real talk” about the devices, and advice from others that may not be part of standard device education and/or may not be explicitly recommended by the manufacturer. One participant wished the manufacturer would incorporate more of this “real talk” into their educational materials, as she said she disliked reading the user manuals while being “in the trenches with the troops” (50-year-old female) and desiring real, honest advice. Others spoke about wanting more access to information about wearing devices with certain clothing and felt this was advice that was unlikely to come from one’s doctor or the device manufacturer.

4. Discussion

This qualitative focus group study is the first to elucidate gaps between a) the availability, delivery, and utility of formal educational materials for initiating CGM and b) the experiences of CGM users, the support they want, and the ways they would like to receive this education and support. This is critical information to understand for the ongoing success of diabetes technology adoption, as competent onboarding can influence whether a person achieves success using diabetes devices [26, 27, 34].

Unlike the onboarding of most insulin pumps, few participants described receiving formal training from their healthcare providers when starting their CGM. CGM training mostly consisted of accessing manufacturer videos and materials independently (i.e., outside the clinic setting). While some participants in this study felt this device initiation was sufficient, most described ways that they filled in education gaps with the use of the internet and social media, and peer support if available. They also described ways that formal support for CGM initiation and ongoing use could be enhanced for adults with T1D in the future. This indicates that CGM is considered a simple tool, similar to blood glucose meters or insulin pens, where instructional education is considered sufficient. Though based on the feedback from this focus group, it may be that CGM should be considered a more sophisticated partner in diabetes care, that requires additional insight, finessing, and attention.

Participants shared about particular content areas they experienced as lacking when they started on CGM. These content areas included: specific insertion techniques; strategies and products related to adhesives; information and support for receiving and using CGM data; managing common pitfalls (e.g., bleeding with insertion, compression lows, signal loss, skin irritation) and knowing what to expect if they occur; and finally, knowing when to call customer service. While these hurdles did not lead participants to discontinue device use, providing relevant education and support earlier may help with increasing device satisfaction and optimizing use [35, 36]. These findings indicate that structured CGM training and education programs such as ONBOARD could increase user satisfaction, continued use and time in range [37].

It therefore makes sense that participants commonly described filling gaps in their formal CGM training by seeking online resources outside of the medical context when facing a challenge in need of troubleshooting or problem-solving. This finding is consistent with existing literature that notes that lay publications and the internet are sources of information for skin irritation and adhesives for device users while formal clinical attention to the topic has been limited [20, 22]. Increasing access to practical wisdom from other device users, with input, education and guidance from healthcare providers, may greatly enhance the experience of new CGM users, reducing known barriers to device use including issues of hassle and on-body experience [14, 18].

An important theme that emerged from this study was the “mental health aspect” of using CGM and receiving constant glucose data. CGM users receive updated glucose information up to every 5 minutes (288 data points/day). The availability of constant glucose data may lead to increased diabetes distress, anxiety, increased negative affect and worse communication about blood glucose levels [38–40], and CGM training does not typically include strategies for managing and reacting to the high volume of data. This finding is consistent with prior research on wearable health tracking devices (e.g., sleep trackers) which has demonstrated that there are unintended psychosocial consequences to self-monitoring (e.g., increased anxiety and perfectionism) [41–43]. While CGM is clearly being trained as “just another standard medical device” (like a blood glucose meter), it may need to involve more in-depth context and understanding for the user to handle the abundance of glucose information that it produces. It may be important to rethink the standard educational paradigm of CGM, understanding that the impact of the CGM on mental health and quality of life may be greater than with other diabetes technologies. Therefore, coaching on effective skills and strategies for responding to the emotional and cognitive aspects of receiving continuous glucose data may be beneficial for CGM users.

Participants offered myriad suggestions in terms of improving not only the content of CGM education but, importantly, the format of this education and support and how/when it is delivered. A common message from participants was the desire for increased real-time access to trustworthy information, ideally from other CGM users who had previously navigated similar issues. It is noteworthy that, when faced with a device issue to troubleshoot, participants tended to turn first to the internet or, if available, to a peer with T1D, rather than their medical team, despite CGM being a medical device. Reasons participants provided for not contacting their provider first included 1) less likelihood of accessing real-time support and 2) desiring “real talk” and advice from other CGM users that may not be available through official resources. An individual’s likelihood to seek medical provider guidance on CGM use may also depend on their provider’s proficiency with the technology which, past research has indicated, may vary widely [44, 45]. Thus, enhancing education and support for device users may also entail increasing education and support for care teams to better support their patients who are using new diabetes technologies.

Results from the current study reveal an opportunity to develop educational and support interventions that may not fit within the structure of traditional intermittent medical visits. This support may include additional time with diabetes educator and providers when starting CGM to provide additional clinical and practical context. Beyond the initial training, support between appointments may be beneficial and is a model already gaining traction for T1D clinical care because of the ability to share CGM data with one’s healthcare team [46]. Patients who share CGM data with their care team can receive remote monitoring and guidance regarding adjusting insulin dosing as needed rather than waiting for their next quarterly medical visit, increasing the accessibility and timeliness of intervention [46–48]. More research may be needed to explore how troubleshooting and other support for the CGM user could be incorporated into this type of care model.

Our findings suggest that there is still a need for more research and program development in the area to develop high-quality, evidence-based interventions to provide appropriate training and support for users of continuous glucose monitoring systems [49]. Our findings also point to potential avenues for future research into both the content and format of this training and support. Given the need for real-time troubleshooting, Just-in-Time Adaptive Interventions (JITAIs) that are able to provide tailored, timely support through a CGM user’s smartphone may be a promising model worthy of investigation for providing support to CGM users [50]. Furthermore, incorporating a social component that is also vetted or moderated by healthcare professionals may be beneficial [51, 52], given that participants in the current study desire “real talk” and honest advice from other CGM users. There are current efforts to create accessible, unbiased resources that highlight the experiences of diabetes device users to help others choose the best device for them [53]. Future efforts could be directed toward extending this type of patient-facing resource to support continued use of CGM and to model problem-solving common issues and pitfalls (e.g., with stories of how others dealt with signal loss or skin reactions) [37].

This study has several limitations which should be acknowledged. Participants identified predominately as White and Non-Hispanic and the majority were in their 20s and 30s, potentially limiting generalizability to Hispanic/Latinx and/or non-White adults with T1D as well as to children and adolescents, and to adults over 40 years old. Additional clinical and psychosocial considerations would be important to understand for delivering CGM uptake support and education in an older adult population [54, 55]. In addition, focus groups for this study were held following participation in a pilot research program designed to increase support for CGM use in adults with T1D [37], so responses to focus group questions may have been primed by the content of the program. However, questions were framed to ask participants to share what, if any, additional support they would have wanted when starting CGM to elicit pre-program responses. In the current study, most participants were using one type of CGM (Dexcom) with small numbers of participants using other types (Medtronic, Abbott). Given the sample size and goals of the current study, we did not explore differences in responses and support needs between the users of different models of CGM. It is possible that different CGM models require different degrees of support depending on the content area (e.g., customizing alerts/alarms; insertion techniques) while other aspects of CGM use may be generalizable across models (e.g., access to continuous glucose data). More research is needed to understand these needs and tailor support appropriately.

Finally, it should be noted that participants in the current study started using CGM independently rather than through the research study, requiring them to already overcome insurance, cost and access issues to obtaining and affording CGM. Insurance coverage for CGM is essential to ensuring consistent use and to maximize benefits from the technology [15–17, 56]. Overly stringent requirements to qualify for CGM (e.g. multiple blood glucose checks a day requirement that Medicare only recently eliminated in July 2021) present added onerous barriers to obtaining beneficial technology [57], further contributing to lower uptake rates for CGM compared to insulin pumps [1]. In addition, ensuring access to CGM also requires attention to eliminating racial/ethnic disparities in diabetes device uptake. A recent study found that after adjusting for insurance, income, and other factors, racial/ethnic disparities in CGM use persisted – with the Black individuals having a significantly lower likelihood of using CGM than White individuals [58]. Understanding and addressing the drivers of these disparities will be crucial to increasing equitable access to beneficial diabetes technologies. Thus, while results from the current study demonstrate room for growth in developing high-quality CGM onboarding education, essential prerequisites are expanding access to and coverage for CGM for adults with T1D.

5. Conclusion

This study is the first to our knowledge to describe the experience of CGM adoption in adults with T1D and to identify some current gaps in training and potential avenues for enhancing device education and support. Providing CGM users with the necessary resources and tools to work through common issues – in real-time where possible – while attending to the emotional and cognitive burden of using CGM could help increase short-term benefits of the technology and increase the likelihood of longer-term sustained device use.