Since continuous glucose monitoring (CGM) systems were introduction many years ago, when a person with diabetes first got one, they would receive in-person training to be sure they understood how the CGM worked. This included learning how to insert the device, calibrate if needed, that traditional finger-stick blood sugar measurement is a different from interstitial fluid, and how to trouble shoot the device. But recently, with newer CGMs, it’s common that the only training is a video in an app on your phone.
Researchers recently conducted surveys on twenty-two adults living with type 1 diabetes to find out how people living with type 1 diabetes felt the self-starting of CGM went for them.1 There are already many barriers identified for people utilizing CGM technologies,2 and the purpose of the surveys was to determine what helped people learn to use their CGM and what additional support they would have wanted.
The major themes that were identified by the participants who completed the survey were:1
- I was able to get it going by myself
- I used the internet for education, support, and troubleshooting
- Participants had a variety of preferences and recommendations for CGM education and support
As many of us with diabetes can attest, and especially those of us engaged with the diabetes online community (including CWD), the internet is a valuable resource when you need education or support related to diabetes self-management. Since diabetes is something that is so individualized, having the support of other people with diabetes can be literally life-saving.
We spoke to diabetes psychologist and co-author of the “Help when you need it” study, Molly Tanenbaum, PhD, who said that although some participants felt comfortable getting started and using online resources, others felt it was difficult. She said, “We heard from other participants about a variety of things they wish they had been told early on when getting started with their CGM, and that some upfront coaching might have spared them some stressful moments when they first encountered certain common challenges on their own.”
Dr. Tanenbaum also mentioned that many felt that they would have benefitted from real-time troubleshooting of devices. The participants in the study suggested giving new CGM users information on support with insertion, common pitfalls, common challenges with adhesives, information on when to contact customer support from the CGM company, and what other people with diabetes recommend for managing the mental and emotional side of starting a CGM.1
Having access to continuous glucose data is a huge shift from only having a single data point when checking glucose on a blood glucose meter. Yet the way that it is being provided to patients is as if it’s as simple as a blood glucose meter. If the goal of having a CGM is to improve outcomes, starting out with the right information and support are critical to ensuring its continued use, which will improve glycemia and quality of life. Additionally, it is unfair to place this burden of finding their own support online while many people may not be able to find the support they need, and there are still many who do not have access to internet outside of the use of public libraries or other public locations.
More studies are currently underway including the still-recruiting ONBOARD study which hopes that providing telehealth education at CGM initiation will help improve time in range and reduce diabetes distress. Until there are changes, there are always resources on the CGM manufacturer’s websites, helplines, your healthcare team, and the diabetes online community.
References:
- Help when you need it: Perspectives of adults with T1D on the support and training they would have wanted when starting CGM
- Barriers to Continuous Glucose Monitoring in People With Type 1 Diabetes: Clinician Perspectives
Written and clinically reviewed by Marissa Town, RN, BSN, CDCES
